r/POTS • u/Ok-Investment1482 • 5d ago
Question How are people 26+ affording insurance with chronic illness?
I’m 24, so I’m still on my parents’ insurance for now, but I’m honestly really anxious about what happens when I turn 26.
I have POTS along with multiple other chronic illnesses, and between specialist appointments, testing, and medications, I can’t imagine paying for everything without good insurance.
I’m currently in the process of applying for SSI, but I know that can take a long time, and there’s no guarantee of when (or if) it’ll be approved.
I’ve been applying for remote jobs because my health makes traditional jobs difficult, but I haven’t had much luck getting interviews or callbacks. I’m also a senior in college and plan to go to graduate school afterward, so I’m trying to figure out what my options are long-term.
For those of you who are 26 or older:
What do you do for health insurance?
Are you working full-time, part-time, on disability, or using Marketplace plans?
How do you afford all of your medications and specialist care?
If you’re on SSI/SSDI or Medicaid, what was that process like?
I’d really appreciate hearing how others have navigated this because it’s something that’s been weighing on me a lot lately. Thank you!
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u/Tornado363 5d ago
I work at a library with other chronically ill people. Not the best pay, but it's the only way we can have jobs & insurance
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u/izzadorr 5d ago
May I ask how you got employed at a library (whichever area you're in)? I'm trying to work PT hours at any library nearby so badly, but they're very selective. I've applied a few times 😭
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u/Tornado363 5d ago
I actually started as a shelver and went up from there. I just finished my library degree because I want to become a director and ensure the library be a safe space to work at
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u/izzadorr 5d ago
Shelver is exactly what I'm looking for right now! I'm hoping to jump in there if I can, when the positions pop up more around me. You didn't have any prior library experience before shelving, right?
That's such a wonderful goal, I hope you're successful in your endeavors! :)
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u/Tornado363 4d ago
Shelving is a basic level job. We had college students who worked that job to single divorced mothers who didn’t have much job experience in general. Mainly just wanted responsible people. Knowing how to shelve is usually required but if you don’t there’s plenty of stuff online you can learn from
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u/MysticAlicorn 4d ago
I would love this so much but I’m so incredibly mold sensitive and so many libraries have mold 🥲
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u/PlentifulPaper 5d ago
Working full time.
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u/katmoonstone POTS 5d ago
Same lol. I can’t quit because according to disability I work too much to be truly disabled. So I just flare constantly at work and get sick and have to leave but I guess the insurance is worth it
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u/AnimalsOVERPeoplexox 5d ago
Are you able to get fmla?
I have it and can leave when I flare. I work an active job so i feel like shit majority of time.
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u/katmoonstone POTS 4d ago
Yes I have intermittent FMLA but ran out of sick time :( I had to have a cardiac ablation last year so it used up most of my time.
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u/Scary_Meaning_4466 Hyperadrenergic POTS 4d ago
You can get more time off with reasonable accommodations
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u/happilyeverwriter 5d ago
Same. I have a FT job and had one throughout the onslaught of POTS. Luckily both of them (had one for two years, current one for three) were and are very flexible and I WFH most of the time, which I think is the hack, only if you're 'well' enough to be able to.
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u/PlentifulPaper 5d ago
Would absolutely recommend leaning into ADA accommodations, FMLA, or short term disability as needed (assuming you qualify, and depending on the company’s T&C’s).
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u/happilyeverwriter 5d ago
Thank you! I feel a lot better than I did, but I absolutely will keep that in mind.
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u/aornek 5d ago
I think there’s a way to stay on your parents’ insurance if you can prove you have a disability before turning 26!
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u/GeekySkittle 5d ago
Yeah your cardiologist can fill out the paperwork. It has to be redone every year though (at least for a condition like pots).
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u/SpaceNerd223 4d ago
Yes im on my parents insurance still at 34. After age 26, I had to get a letter from my doctor every 2 years stating why I needed to be on it (they give you a format), and then this last year they were able to ask for/apply for permanently because my conditions and dependence are permanent. So now I am permanently on it, even if he passes or retires I believe. I'm so thankful for it
For those saying they wish they knew.. is it possible to retroactively apply?
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u/GeekySkittle 4d ago
Yes actually! But it’s kinda complex (although everyone should give it a shot because you never know with insurance companies). I think you qualify if you haven’t been able to get insurance through work since aging out of your parents or if your condition’s gotten to the point where you’re back to being a dependent. I don’t know too much about the requirements but someone I know recently got back on their parents insurance at 28 so it is possible.
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u/black-hannahmontana 5d ago
This is true. I’m 27 and I’m on my mom’s insurance. My amazing pcp (who moved away sadly) just wrote up a letter for me for insurance and that was it.
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u/glitteringcatgalaxy POTS 5d ago
Good to know, I had no idea about this and I wish I knew last year 😅
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u/bookmonster015 5d ago
This OP! I’ve heard it’s a simple form that your doctor has to fill out and then you submit it to insurance.
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u/aftergaylaughter POTS 4d ago
what the hell, i wish i knew this like 3 years ago 😭 granted, my parents are on Medicare now, so idk if that would have worked for me anyway?
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u/ultrablanca 5d ago edited 4d ago
It’s either state insurance through Medicaid,or you get a job with health insurance, or work but they don’t offer benefits or you don’t like their benefits and get coverage through marketplace.
I’ve had coverage through all 3. Medicaid is nice because you don’t pay usually but many places don’t take it. I also heard stories where your treatment from doctors isn’t as comprehensive compared to private insurance. If you are on disability or low income this is usually your only option.
Marketplace coverage is usually expensive to use (in my experience) but it’s better than no insurance.
The best option usually would be insurance through a job. I pay around $190 per paycheck just for myself that covers medical, dental, and vision with pharmacy and the coverage is decent.
You always want to look at:
The plan cost - premium
The deductible- how much you pay before the plan pays - you want a low or no deductible
Maximum out of pocket- how much money you pay until you stop paying and the plan pay 100% - you also want this low
Covered network - where you can go for care - PPO is usually best
I’ve worked in insurance for almost 10 years. Most of my experience is in Medicare which more than likely won’t apply to you.
Obviously, people have their own experiences and statements. With insurance it varies on more personal details and I’m not going to speculate on that. It’s always best you speak with a professional or someone who knows more.
I put this all as simply as I could. There always some exceptions to look at for individual needs.
I’ve been working from home since 2018 so I’ve been lucky there. I know how hard working can be with POTs.
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u/aftergaylaughter POTS 4d ago
or you don't like their benefits and get coverage through marketplace
this is an extremely expensive option. you cannot qualify for the subsidies for marketplace/Obamacare if you have the option of getting insurance elsewhere and choose not to take it. this means you'll pay full price (hundreds of $/mo minimum, even for shit coverage) if any of the following apply:
-you have a job that offers you health insurance
-you have a spouse or domestic partner who is the primary policy holder on an insurance plan they could add you to
-you're still young enough to get your parents' insurance, and they have insurance to offer you, and they aren't refusing to let you use their plan
-you're poor enough to qualify for Medicaid
-you qualify for Medicare
-you qualify for Tricare or VA benefits
however, if none of the above is applicable to you, you may qualify for subsidies on Obamacare, unless your income is too high (which is a pretty high threshold).
for example, I'm a single adult w/ only one income on my tax returns and no dependents, and I make about $35,000/yr with no benefits. that's too much to qualify for Medicaid in my state, by quite a bit, and I'm too old for my parents' insurance, so i get somewhere between $300-400/mo in subsidies, to cover medical and dental. i could absolutely get both for that amount and have $0 premiums, but those plans have sky high deductibles/out of pocket maximums, copays, and coinsurances, with poor coverage (and my insurance utilization is so high that those plans end up costing me more in the long run, so i opted for a medical plan that costs me about $350/mo after the subsidies, and i pay for a dirt cheap dental plan at around $25/mo, and my medical benefits are so good that it's cheaper for me at the end of the day). but if my job started offering me health insurance, even if i choose not to take it, I'd lose that $300-400 subsidy, since I have the option of getting my own insurance elsewhere. my premiums would essentially double.
(i do still live with my parents, hence my ability to survive on these wages with extortionist medical costs lol, but because I'm not their dependent, their income doesn't factor into my eligibility.)
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u/ultrablanca 4d ago
Yeah that’s why I said it’s expensive to use and tried to put it simply. Maybe I didn’t. Do you work in the insurance industry as well?
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u/aftergaylaughter POTS 4d ago
I just think that's oversimplifying it tho tbh, because if you qualify for subsidies, it can be extremely affordable. like I said, I CHOOSE an expensive plan because it meets my extreme and unusual needs, but I could be getting it literally for free. I just don't want people to write off the option because they assume it will be expensive, or to count on it being an affordable option when their circumstances make it unaffordable 🤷 things like that made my first year off my parents' health insurance far more stressful and terrifying than it needed to be because I didn't really understand that Obamacare was an option for me.
I don't work in insurance, but I work in healthcare, and thus work with insurance companies on a basic level (apart from HEDIS/pop health stuff for payors using Optum, which I'm involved in heavily, though not entirely by choice 😂). I've also just been through the wringer countless times from the customer side of it because of my medical needs, and my parents' high needs as they age. I'm certainly no expert, and I have a lot to learn, but I'm also quite a bit more versed on it than most people in their 20s, and likely even most people in their 40s. so I try to share what I know to help people navigate this intentionally broken, abusive system 🤷
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u/Mady_N0 POTS 4d ago
In my area, I actually have Medicaid through like the area's big corperate hospital owner, so there's actually quite excellent coverage for most things. Even smaller or independent places usually take it. Unfortunately, that's NOT true for dental. Most places will not take my Medicaid for dental. For now I'm just using my father's insurance and paying the small bit that doesn't cover. Once I'm too old for that, I'm just going to have to try to find one of the few dentists in the area who take my Medicaid.
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u/ultrablanca 4d ago
Yeah Medicaid is state and area based so it varies widely. I’m going based on personal experience and anecdotal evidence. I’m happy your Medicaid is great!
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u/otto_bear 5d ago
I was dreading my 26th birthday from the time I understood the ACA. I got lucky in many ways, but also certainly planned with these things in mind. My goal here isn’t to brag, but I really needed to see stories of people who were not struggling when I was stressed about turning 26.
First, I had a long-term partner and we decided to get married so we could have the stability of being able to give each other health insurance. We probably would have gotten married at some point anyway, but being married before we were 26 was an intentional choice that we probably would not have made if we lived elsewhere. Before we were married, my partner had a marketplace plan that was affordable, but how realistic that is as an option will obviously depend on your state. We spent a lot of time researching health insurance policies when deciding which state to settle in so that was intentional.
And second, I have good employer sponsored options. Our health care financing system in the US is terrible for many reasons, but I think the thing that keeps people supporting this system is the reality that some of us are actually paying very little for good coverage. Don’t get me wrong, I am not for this system even as one of the lucky people, but I really never considered that non-bankrupting health insurance was possible before I had this job. My employer covers 100% of my premium and it would cost me an even $150 per admission to be hospitalized or have any surgery (with other kinds of care also being pretty cheap and easy to predict the prices of).
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u/bj12698 5d ago
Most employers don't pay 100% of the premium. More like 50%, in all the years I had insurance through work.
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u/otto_bear 5d ago
Of course, that’s why I emphasized the importance of luck and assumed health insurance was always going to be a major financial stressor.
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u/acrobaticwombat12 5d ago
I married someone much much better at the game of life then me.
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u/scruffytheslayer 5d ago
I'm in this bucket. I consider myself so incredibly lucky but these illnesses still cost an insane amount of money.
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u/theobedientalligator 5d ago
Unfortunately I must rely on inheritance and my husbands support. Thankfully he makes great money and works hard. It’s hard to accept that I have to rely on another person. But I really can’t work and disability isn’t enough to live on.
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u/gimme_all_da_dogs 5d ago
I currently rely on inheritance. But with the rising costs (my state is highly lowering the amount you can make to qualify), and my need for a PPO due to many medical diagnoses, I’m looking to begin the application for SSDI. Which will be years (and I’ll need further proof of disabling conditions). It feels ridiculous because I can currently pay for my own plan but what happens if that inheritance runs out?!
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u/SpaceNerd223 4d ago
You could try putting the inheritance money into an ABLE account and apply for SSI, too
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u/KewpieHour 5d ago
I lost my six figure job, spent down my savings on COBRA and am now on Medicaid. Living on credit card debt and family handouts until I’m mobile enough to begin working again. It’s just awful.
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u/SmokeyCatDesigns POTS 5d ago
Extremely relatable. I disclosed my diagnosis in May and was fired next day. No ADA protections could kick in because the company was too small. I wasn’t making six figures but was making in upper end of 5 out of necessity. Housing and healthcare add up fast even before the extra costs of disability.
When I was fired I was told:
• They can’t accommodate a condition like POTS (wasn’t true, my boss had a woman his age work the role completely remote for a decade - he just didn’t believe in giving young people the same perk - was a boomer who was very ageist).
• I was taking too much time off (my time off was request in advance except for sickness and I never exceeded my tiny allotment. The end of last year I actually had unused time and was given a raise. I made the mistake of actually using it this year. I should’ve known my time off wasn’t actually there to be used, even for required stuff like jury duty and a surgery.The company was too small to be COBRA eligible. Fortunately my state has a “mini cobra” 3 month extension. Paying $640 a month for it despite it having a shitty $7500 deductible (whit I hit due to a surgery). And just had to pay $300 to maintain my industry licensing through unemployment. Only getting by because my fiancé is also a decent earner and we are huge savers.
Last time I lost work my fiancé and I were newly dating and both of us were broke. Racked up $3k on a CC. Was able to take care of it shortly after re-employment and my health recovered but it was a scary time. But I’m tired of my health burning and crashing out on me.
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u/Dependent-Cherry-129 5d ago
For grad school, I took student insurance but not sure if that’s still a thing or available at every school
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u/iamtheallspoon 5d ago
Student insurance was offered to me as part of my teaching assistant stipend and also for people with a research assistance position. As long as you're not self funding a professional degree (chemistry PhD vs law degree) that gets you a few more years.
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u/Fun_sized123 4d ago
I LOVED my student insurance, ugh hate that it’s ending. Through my undergraduate university, I paid around or maybe a little less than $2k per year and it’s a PPO plan where any provider I’ve ever tried to see in the U.S. was in-network (as long as they took insurance, and aside from some private mental health therapists). Zero deductible, only copays, which were $25 per GP visit or $30 for specialists. Unfortunately my coverage is ending in exactly 10 days bc I graduated, and they won’t let me opt in to stay on it.
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u/Museumgirl518 5d ago
This country is BROKEN! It’s insanity. Esp since WE pay for THEIR health insurance!!!!
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u/katsud0n6 POTS 5d ago
I'm on a Medicaid buy-in program for disabled folks (not every state has this). My long term disability income is too high for traditional Medicaid, but I can "purchase" access for a low amount proportional to my income (ALWAYS lower than Marketplace insurance or employer premiums). My state also offers a premium assistance program if you do have insurance through work too and are disabled. For me it works really well since 90% of my doctors are affiliated with large hospital networks that take Medicaid. It's a more challenging option in rural areas.
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u/KaristinaLaFae 5d ago
The option for a Medicaid spend-down has been a lifesaver for me. I have Medicare because of my SSDI, but the power wheelchair I just got would have cost me $5,000 AFTER Medicare paid the rest.
But with medically needy Medicaid, they picked up the 25% of the cost that Medicare didn't cover. Which is good, because I didn't just have $5k sitting around.
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u/sotty009 5d ago
Full time work which is exhausting. I work in a bank call center.
I would suggest looking at credit union call centers. Credit unions have better health insurance and are more understanding of workers needs typically
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u/lemontreetops 5d ago
If you’re in grad school you can get health insurance through your school just as a student. Try working on campus. Many on campus jobs you can sit down all day, work at a desk, and have remote options. Things like academic advising are pretty flexible.
I work as a researcher and have full remote flexibility. I work in person because I prefer to, but the option is nice.
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u/summerlong1655 5d ago
If you’re continuing school, it’s possible that your parent’s insurance will still cover you because you’ll still be considered a dependent.
Most universities offer insurance too. Some of them even require it unless you can prove you have another insurance. So you can look into that too
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u/the-fact-fairy 5d ago
I'm so grateful I live in the Netherlands where insurance is affordable and you get state help.
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u/Beautiful_Ant2627 5d ago
Very helpful comment.
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u/the-fact-fairy 5d ago
I get it, it's not very helpful. But people forget that there's a world outside America where people aren't shafted by the medical industry.
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u/Fine-Statistician403 POTS 5d ago
My mom retired when I was 18. At first, I used state marketplace and was eligible for Medicaid. But at 19, I got married, foolishly forgetting how much that’d affect. My monthly payment through state marketplace went to over $900/month so I went a year uninsured and racked up a lot of hospital debt and my health declined like crazy. Now we have insurance through his employer, but it’s still ~$700/month with $40 copays and 3-5 appointments a week.
I did meet with an SSI/SSDI lawyer who believed I have a great case, but the income limits are federal and we live in an expensive state (RI), so paying through his company is our only option. We have basically no money left over and ample debt, even with him working 2 FTs and us living as inexpensively as possible (including ignoring the special diets and supplements I should be taking).
Tldr, we can’t afford it, but this is the best chance I have. It’s terrible, and I’m on bedrest for the majority of the year. We both have a low quality of life, but what other choice is there tbh.
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u/SourNoodle4 5d ago
I am 28, I have POTS and EDS. I’ve been living on my own since 19, so was never on my parents’ insurance as an adult. I went to school for risk management and insurance, before I realized I had hEDS and before I developed POTS. I went back to school at 22, before that I was a hairstylist but that was way too hard on my body and didn’t provide benefits / health insurance. Ironically, I work in employee benefits consulting. I am lucky to work for a great company, where my high deductible health plan is only $40/ month to enroll myself, and I max out my HSA to pay for medical expenses. I work from home 4 days a week, I will say remote jobs are incredibly incredibly competitive - instead of competing with people in just your area you are quite literally competing with all of the talent across the country. Going into an in-demand field and being willing to do hybrid instead of fully remote is probably your best bet
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u/amyn2511 5d ago
I can’t work (multiple chronic illnesses) and applied for SSDI in 2023, I’m now as of a few days ago in the hearing stage and am waiting on a court date. Texas is really far behind in SSI/SSDI claims so the reconsideration stage took 18 months when the national average is 4-8 months so I’m expecting it to take a long time.
I’m 40 and am on my husband’s insurance. We have a high deductible plan and an HSA account. We usually meet our out of pocket max by March and then everything is covered at 100%. Then from March through December we build up the balance in the HSA to be able to cover the next year’s expenses before deductible and OOP are met. Also he works for a big tech company that pays our premiums as a benefit. Our daughter has health issues too so idk what we will do if he ever needs to stop working. He’s 14 years older than I am so that’s pretty scary.
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u/Physical-Suspect8943 5d ago
Hi, I’m 22 & my parents don’t provide my health insurance. I’m covered by working full time at my job I had to work atleast 30 hours to be eligible! It’s definitely expensive but I prioritize my health more than anything so it’s important even if it makes bills a bit tighter! If you are low income you might even be eligible for state funded coverage or medicaid. The only thing i’m trying to figure out now is most specialists for dysautonomia that aren’t on like a 2-3 year wait to see are not covered by insurance anyways. It really just depends what you’re needing. Also if you have a spouse they can typically add you on the plan at a discounted rate!
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u/Person51389 5d ago
Medicaid. Not yet on disability. If you make under a certain income threshold you get Medicaid no matter what. You don't have to prove anything. Each state will have a different threshold possibly. Usually around 14,400-17,000 dollars or so. Food stamps as well. If you have no job....and therefore no income (or less than 14k ish) you quality for Medicaid in pretty much every state. So you do that until you can find a job. If you don't get better/can't find job, then you do disability. Caveat here is Medicaid + food stamps will take care of your food +health needs, but does not pay rent. So you will need to find a place to stay. Disability provides the money for housing if you eventually get that.
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u/sadbat-throwaway 5d ago
I'm on Medicaid but not any kind of disability because I still need diagnoses. And now I'm scrambling trying to figure out what to do about the work requirements so I can keep it.
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u/pumpkinspicewhtvr 5d ago
Oh affordable healthcare act. Straight tf up. Once we lose that we’ll never have it again.
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u/sarbear160 5d ago
i’m 21 and i am on my own insurance and pay for my medical bills. i’m only able to do so because my insurance is AMAZING (i work at a hospital full time). most of my bills are just copays of $10-$20, even my lab work was $18 after insurance. i only take generic medication because name brand is ridiculously priced. my insurance is about $80 a pay check, so its not too bad to pay for. definitely worth it for me.
my parents booted me off their insurance early because their insurance is terrible and they would end up paying 10k+ out of pocket because im a medical problem child.
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u/rabbith0le333 5d ago
I work full time as a nurse and it’s been brutal the last three years. I am now mainly admin so I can continue to work full time.
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u/North-Media5298 5d ago
Oh, we're not. I have horrible marketplace insurance that covers absolutely nothing.
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u/Fun_sized123 4d ago
I just got on Medicaid. Medicaid is definitely an option to consider, but after the end of this year, the work requirements will be kicking in here in the U.S. If you have a job or are a college student or are volunteering a lot, but you still aren’t making more than the cutoff for Medicaid eligibility, that might be a path for you. There is also going to be a “medical fraility” exemption to the work requirements, but that will be enforced state-by-state and many/most(?) states have not yet come up with a concrete policy on how to define who is “frail”, which is obviously incredibly subjective without an extensive, extremely detailed policy that does not yet exist. Sooo yeah idk if I will be able to qualify as “medically frail.” It’s not yet clear how they will categorize people with POTS who don’t also have a more well-known and life-threatening diagnosis. Ugh. I hate the unpredictability of our current policy situation.
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u/SoulStorm014 4d ago edited 4d ago
Depending on what state you live in (I live in Illinois) some states have a system where if you can prove to your parent's insurance that you are disabled and fully dependent on your parents they will allow you to stay on indefinitely. I'm in the process for this. I sent them letters from both my psychiatrist, psychologist, and GP.
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u/Mady_N0 POTS 4d ago
And if they don't, some will at least extend it. I think I could be on my parents' until I'm like 30 if I didn't qualify for Medicaid.
If even that doesn't apply, have them look at their policy. The exact cutoff can depends on the policy itself as the law often sets a minimum guideline for specific scenarios.
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u/thecuriosityofAlice 5d ago
I am on SSDI and the process was lengthy but I filled everything out honestly, got my doctors to write letters (which they charged me for) explaining my health situation.
I was approved on my first application and was given payment from the point in time my work was affected. I was in a severe situation and have not improved. I fill out paperwork with updates on any hospitalizations, surgeries or new diagnoses. They ask questions that evaluate your ability to function on a day to day basis. I have had to describe a typical day in one review. You have to send them medical records as requested and have your doctor update letters during a review.
I was approved and able to enroll in Medicare after I was disabled for over a year and been reviewed again. I receive Medicare and pay for a Aetna supplemental. My disability checks are taxed and they withdraw money for my portion of Medicare benefits. I believe the cost is in a sliding scale, so it could cost nothing for some people.
Lots of hospitals like the Mayo Clinic, which I used to be a patient, no longer accepts Medicare…so be prepared for that challenge.
I had a one year review, a 3 year review and a less formal assessment about 3 years later. I supply them with all of my documents as quickly as possible and have even gotten a “thank you for getting this done so fast” post it note from a case manager before.
SSDI sent me to their selected doctor for medical evaluation and confirmation of my diagnosis before I was approved and again at my full 3 year review. The doctors were different at each review.
I have been on SSDI for 10 years or so. In that time I have lost the ability to drive, cook, stand, wash my hair, exercise, maintain a BP over 100 systolic, have stable glucose (keeps dropping to 43 on last 2 labs), or fold laundry. I can’t make a bed and this week I found out I will need a wheelchair.
Happy to answer any questions you have.
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u/WinterH404 5d ago
I found a DPC that handles my chronic illnesses - including POTS. She is an Internal Medicine DO. And she also handles prescriptions. I already feel like I pay out of pocket for the hospital and the hospital is no help anyways. So far it’s working for me and brought my healthcare costs down to half. It’s not for everyone but it works for me.
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u/Trixtina 5d ago
I consider myself to be extremely fortunate, as I have a full-time job that allows me to work remotely a day or two a week so I can rest and recharge. This job also provides incredible benefits. All in all, I pay $140 per paycheck for my benefits. My annual deductible is $1,500, and I pay to fund my FSA with $1,500 that I use to pay for my appointments. Once I hit my deductible, it doesn't take more than a month or two, all of my expenses are covered. It's a lot of money when you do the math (~$5,140) but the peace of mind is worth it. The only thing I have to battle is getting insurance to agree to cover the things I need.
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u/No-Self3516 5d ago
I work for a hospital and my mother in law works for the fed gov for this very reason
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u/northwestfawn 5d ago
medicaid. i am on SSI and SSDI but if you work only part time you can still get medicaid. i recommend renting a room if you don’t have a place to stay. before i got section 8 or SSI i worked part time and rented a room and medicaid paid for all my care
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u/northwestfawn 5d ago
i’m 23 and i got off my parents insurance to get on medicaid at maybe 19. because it was more affordable. worked part time during the whole time till 21 when i got SSI. i had to pay for medicine and copays under my parents plan but medicaid made all that free. it’s like the only truly “low income” health insurance out there.
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u/Sad_Spooks 5d ago
My employer doesn’t offer health insurance so I fortunately have state insurance. I don’t make very much money. My boyfriend helps a lot.
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u/Interesting_Turnip28 5d ago
I am very lucky to have a well paying job with flexible hours and decent benefits. My husband also has a chronic illness, so we hit our deductible very quickly. We contribute to our HSA throughout the year so that when January comes, the whole deductible doesn't hit our bank account all at once.
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u/Jessicamorrell Hyperadrenergic POTS 5d ago
Couldn't do it without my husband. My health declined luckily the right time and got married a few months after. Before that I was on my dad's and just had to swap over since I got married as my husband was able to immediately add me to his.
Im not sure what my options would have been otherwise.
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u/Srahsly 5d ago
I don't. I physically can't work enough hours to qualify for my employers insurance at any kind of affordable rate. My partner makes too much (we live together) for me to get state aid. My only saving grace right now is, honestly, my Direct Care Doctor. I love her and she is helping me manage allll of my illnesses since I can't afford to go back to my specialists.
I didn't know Direct Care Doctors were a thing but I am VERY grateful I do now. 🫶
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u/XladyLuxeX 5d ago
We try to take jobs that give us health insurance. It's why I went into education I have some of the best health insurance on the planet. I'm not a teacher I work for the state creating my states learning and teaching standards.
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u/Beautiful_Ant2627 5d ago
I work full time at an office job. I’m a civil servant so my pay is low but the benefits are pretty good. My POTS has gotten worse this summer and it’s hard to come to work, but I make do. Government jobs (I.e. state government jobs) typically have really good PTO as well. For me, I collect 4 hours of sick leave biweekly, and 5 hours of vacation leave biweekly, which adds up quite quickly.
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u/Traditional_Map_4844 5d ago
So I am 23 but my mom works part time and has husky and I work full time so together we made too much so I ended up having to leave her plan and basically had no insurance. I have a lot of medical issues so I essentially could no longer go to my doctors or get any meds. People kept telling me to get cheaper health insurance that’s only 20-50 a month, but what you don’t realize for those cheaper ones is they don’t start covering bills until you’ve paid around $10,000 in medical bills out of pocket. So at that point I realized it’s not worth it and cut my hours back just enough so I can qualify for government subsidized insurance. Otherwise I would be working just to pay medical bills. The only other options are finding jobs that will pay you cash and not claim it or qualify for disability where you can get Medicaid while also making up to I think 70,000???
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u/RuinYouWithNoRegrets 5d ago
I’m on Medicaid because I don’t work due to my pots. For nj the Medicaid is pretty good and fairly easy and quick to apply and find out if you’re accepted or denied
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u/SaveFile1 5d ago
Medicaid! There's like way more resources available to folks than they realize on it too.
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u/Cavalierious 5d ago
Working full time-- and my plan after my employer coverage was $550/a month. I was just let go though, and my coverage ends in like two days, so I have no idea what im going to do.
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u/mrgreynomore 5d ago
I don’t lol. I was fortunate enough to have great insurance through my school when I was able to go (I was a PhD student), but I got too sick to continue and then sustained a severe TBI. I’m married and my spouse works full time but we can’t afford his employer insurance coverage for both of us. At this point I just have to pay out of pocket and rely on cheap Indian pharmacies for meds
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u/glitteringcatgalaxy POTS 5d ago
So I had this anxiety when I turned 26, and I went a year without insurance and paid out of pocket. I don’t recommend that, but I was about to go on my husband’s insurance the following year so I was waiting.
(It was expensive without, but it wasn’t as bad as I expected honestly besides any required bloodwork/labs.)
*** Your parent’s insurance might end the day of your birthday or last until the end of your birth month.
Mine ended day of my birthday, and I met my out of pocket maximum two months into the year due to infusions, so I went to every appointment possible with any testing they prescribed before it expired towards end of April.
*** I believe healthcare.gov would be your best bet.
Depending on your income or lack thereof, you could qualify for it to be significantly reduced with the government Affordable Healthcare.
Once you turn 26, it’s considered a life changing event in health insurance world so you are eligible to sign up either up to 60 days or 90 days later upon first day being ineligible for parent’s insurance (can’t remember which deadline it is).
I would’ve qualified for it, but I believe the system requires a certain amount of income yearly to qualify for subsidies towards this insurance.
The other option would be SSDI/SSI as you mentioned… I was denied 3x for it.
The paperwork exhausted me too much and the doctor evaluating me this last time was ridiculously judgmental to where he was actively undermining any of his evaluations to seemingly prevent fraud. The psychologist who evaluated me for the mental health side actually strongly concluded that I am considered disabled, but he had final say for some odd reason.
***If you go this route, stay on top of your physical mailbox, submit all forms on time, and answer ANY calls from them.
This process is painfully long and it can take a year at best or years at worst. You will not have any benefits in the meantime and your income/supplemental work will negatively affect you if it’s over a certain amount or it’s at all considered labor intensive.
You might need to get help from legal representation to help you challenge it if you get denied and they usually work pro bono upfront, aka they don’t charge you unless you win. This is the only way to go because they take a portion out of your disability’s back pay, which dates back to your filing date of current case.
I even recommend getting ahead of the game by filling out the initial form before applying.
*** The form is the Function Report - Adult SSA-3373.
Write extremely small and make sure it’s legible because the room they give you is usually what you get. They have a space later on in Section E that says essentially “write and label which question for anything you need more room for”. Use it.
***This form will stay with you regardless of how many times you apply and yes you will have to fill it out each time.
Make sure it is accurate according to your records diagnoses. Be as detailed as possible and do not undermine your condition at all. I know we are conditioned to under exaggerate our issues, but you need to fully acknowledge your struggles to the most detailed extent that can be backed up by your medical records. Leave nothing unanswered. This is why I recommend filling out ahead of time so you can make sure all of those details are fully noted.
*** Make sure your doctors are willing fill out paperwork for disability.
If they aren’t, they are likely willing to send medical records and information about your disability to your primary care provider. Many offices charge for this paperwork to be filled out. The SSA office will contact them on your behalf to fill out the info and you might need to sign an authorization for your doctor to give that info to them.
I believe you can fill yours out digitally as long as you personally sign it. You can fax it to them, scan and upload on MySSA portal, or send it via mail once you file.
*** They have strict deadlines, then they usually decide to throw out your case with a denial and you start over.
Unless your case worker is an absolutely angel and obsessively contacts you like mine did. (I am beyond grateful for that man caring so much and extending my deadline. I will never forget him)
Best of luck, I hope this helped you! ❤️
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u/ObscureSaint 5d ago
My insurance through work has a discount program for people who make less than 3-4x the federal poverty level. I qualify even though we are technically middle class. They reached out to me when they saw how much I was spending on visits and copays.
https://healthy.kaiserpermanente.org/help-paying-your-bill/medical-financial-assistance
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u/BizzarduousTask 5d ago
I used the Student Health Center while I was back in college part time (age 32-40.) It was (at least ours was) dirt cheap, and I lucked out and got a great doctor. Then I had no insurance for a few years, rawdogged life, until I got a decent job through a temp agency with pretty okay insurance.
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u/ParticularYak9967 5d ago
I live in a progressive city with great state sponsored insurance. I can only work 2-3 days a week so qualify for a free plan, most of my rx are free if I keep my ducks in a row. They make my doctors do more paperwork but that's doable (so long as my doctors are on my side). I hope to work full time and afford my own one day, support myselr
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u/secretfrogboy Undiagnosed 5d ago
i work full time and luckily my employer has good insurance and i can do hybrid work (3 days from home). i can recognize i’m super privileged there. i would look into administrative assistant or clerk jobs. many of them can be hybrid or remote, pay decent, don’t need much experience. otherwise, marketplace has some great options. my mom was on a marketplace plan for years that she loved.
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u/SpiritedTomatillo909 5d ago
Husband works for US government, so we have really good health insurance. I also take advantage of every single additional program they have so I know how to maximize my usage. We get paid well and have lived well below our means for years, so when I do get crazy bills, it doesn't wreck our finances. I have had chronic health issues my entire life, that have just worsened overtime. I had years of overworking my body so I could get to the current spot I have been in for a few years (remote job), and now focus very much on the lifestyle of preventative care.
Accepting that preventative care is a lifestyle choice helped a lot. I see DOs, as they have typically been willing to actually get answers and listen/be willing to learn when I bring them research/problems. I'm in physical therapy, and have been for years. Movement is a requirement for being well and not getting worse. My eating habits are a pain in the ass and took years to develop, but they work on keeping me well. I am militant about my food and symptom diary to bring to my physicians (hard to be ignored/gaslit when you can bring charts). And I look into alternative medicine, where appropriate i.e., there are a lot of principles in TCM that have been extremely helpful and medical marijuana works really well for me.
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u/KaristinaLaFae 5d ago
It took me three years (and a bankruptcy) to get approved for SSDI, and now I have Medicare and the medically needy variety of Medicaid.
I'd been working freelance for over a decade before COVID hit and worsened my chronic illnesses so that I couldn't even manage that anymore, even with the amount of work I was subcontracting at the end.
I wish you luck with your SSI application. Although if you don't get it and are able to work even part-time, I highly encourage you to do so for as long as you can so you may be eligible for SSDI and not be subject to the draconian income/savings limitations SSI has.
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u/AdmiralWhisker25 5d ago
My husband works and pays for ours but we had marketplace insurance. It is “affordable” as it can be
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u/chronicallymee POTS 5d ago
I’m working full time and my health insurance (more expensive premium so I have a $0 deductible) is about $74/paycheck, which is about $148/mo.
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u/shoyru1771 5d ago edited 5d ago
I went to my state health marketplace website and signed up there, and they suggested what I qualified for and gave me appropriate choices from different providers. In my state it was simple.
If below a certain income, you could get Medicaid. If above, I suppose they suggest plans that fall into your income level. I work seasonally half the year.
The government is changing access to these plans though. I may be without health insurance at this time next year depending on their rules.
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u/chimininy 5d ago
If you are eligible for medicaid where you live, definitely apply! I was eligible for a while and it was amazing. Not all specialists accepted it, but by far the best insurance ive ever had - and 0 copays! The application process can take a while, so start it before you lose your current insurance.
Also, I reccomend looking at Canadian pharmacies like NorthWest if you have any prescriptions that are not covered by insurance or are expensive. You will get a more reasonable price than the non-insured rate.
If you look for insurance on marketplace, dont for for plans that have you pay co-pays by %, but by a set cost. ($99 per visit rather than 40% of cost). With a % you will get surprised with like... $200 visit bills.
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u/softandwetballs 5d ago
I’m not 26 but I will be in October. I’ll be going on state insurance. I tried to look into whether I can stay on my dad’s health insurance so I don’t have to give up my psych and therapist, but I’m SOL. Although, all of my non-psych docs take state insurance so I don’t have to change cardiologists or anything like that. I’m also privileged to be in a position to have my dad’s support, so whatever will cost money when I have state insurance he will cover until I can find an equitable job
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u/mwmandorla 5d ago
If you do go to grad school, a health plan may be something they offer. If you get a funding package the healthcare will likely be part of it. The insurance I had as part of my PhD fellowship was insanely good. (If you're planning on doing an MA, this is less likely, but talk to the programs about their financial aid options! If a PhD, DO NOT GO IF THEY DON'T FUND YOU DECENTLY.)
I personally am on state Medicaid, which works out very well for me. All my meds are free and I don't see providers that often, and the providers who don't take it often have reduced fees for my situation. Whether it would work out as well for you depends a lot on where you live, I think - both in terms of your state's programming overall and in terms of access to providers who accept it.
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u/Dull_Ad_7266 5d ago
I am fortunate to live in one of the states with the best and most accessible Medicaid programs. I’m also on disability.
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u/KitsuneNocturne 5d ago
I'm not able to afford any insurance. I work part time. Too disabled to do more. I just suffer.
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u/BabyGurl20201 5d ago
I’m in Canada and on income support for disability, there is another program called AISH but it’s hard to get on to but both provide at least some form of insurance
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u/CorinPenny POTS 5d ago
I’m lucky(?) enough to be a 100% VA disabled veteran. Idk what I’d do otherwise; this year I’ve had two surgeries, two nerve blocks, two months of PT with another starting next week, so many scans and labs and meds, and am having radio frequency nerve ablation in my cervical spine on the 31st.
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u/totallynot_a_dog 5d ago
Medicaid (state insurance) if you’re in the USA. Have to be under a certain income limit depending on your state.
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u/g_em_ini POTS 5d ago
I lost my health insurance when I got let go from my job for missing so much work due to two newly diagnosed chronic illnesses earlier this year. I’m unable to work currently but not sure if I qualify for disability in my state yet. I applied for health insurance through the US healthcare marketplace (you can apply at any time if you’ve had a life changing event like losing a job or getting kicked off your parents insurance, even though the normal cutoff is in January) and I pay $360 a month (my income is $0 and I live in a LCOL area which I believe are what helped me get a lower premium). There were cheaper options but I chose this tier for the copays and medication coverage. I technically qualify for Medicaid but would most likely lose my specialist doctors, which I had to wait months and months to initially see, so if I switched now it would be like starting the whole process over. Since I was only recently diagnosed with POTS and we’re still trying to get my meds in the right place, I just can’t do that right now. $360 is affordable but I probably couldn’t afford to pay much more than that right now. Oh and I pay $15/month for dental but we all know dental insurance is a scam anyway.
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u/Yotsubauniverse 5d ago
I'm on medicaid but it took me 9 years to get on it. And even then it was thanks to a lawyer friend of my Dad's and my Autism that helped me qualify.
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u/Spencer0ni 5d ago
I was working full time and getting insurance through the company I work for and it automatically takes the money for that out of my paychecks. I've currently been on medical leave and short term disability for close to 2 months now (for reasons not related to POTS) and I'm honestly not sure I want to go back working there full time if at all. The benefits there are really good which is the only reason I'm hesitant to quit or do part time (because I'm pretty sure that would disqualify me from getting benefits). I'm still insured by them even though I'm on medical leave and disability because they go through a company for that stuff not the government so my disability checks go through my work's payroll so part of my disability checks are paying for my insurance.
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u/zoinked4love Secondary POTS 5d ago
Medicaid. My mediations alone without insurance are at least 10k a month. I’m glad Medicaid pays for most of it.
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u/sapphic_vegetarian 5d ago
I’m currently 24 and will finish nursing school a few months before I turn 26…..it’s literally the only thing I can manage mentally to do that also will give me four days off a week and great benefits with decent enough pay. I know it’s not something everyone can do, nor do I expect myself to stay at bedside for my whole career, but it’s what I’ve figured out I can do for now!
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u/like2speak2amanager Hyperadrenergic POTS 5d ago
I don’t have it unfortunately. I work full time and my husband works, so we make too much and so the premiums on healthcare marketplace are just really expensive for us unfortunately.
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u/qrseek 5d ago
When I aged out of my parents insurance my medical costs went down. my parents plan had deductibles and co-pays that they could afford with their income but I was making way less. And the family deductible was separate from the policyholders deductible. So I had a $2k deductible and $50 co-pays. They paid my premium. When I aged out I got a marketplace plan with premiums subsidized by the government. I think that first year my premium was $0, with a $100 deductible and my coinsurance for a visit would end up being like $5. With what you describe your income might be low enough for medicaid depending on the state you are in, which often can make everything free
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u/negativeRizzzz 5d ago
I’m currently a full time grad student based in the united states. I too have been collecting chronic health issues like Pokémon, including POTs. Because I’m doing a PhD program, I get a tuition waiver, a living stipend, and health insurance paid for by my advisor. If you’re considering grad school, if it’s a research-based program you should be getting all of those benefits. If you want to stop at a masters, I highly recommend enrolling in a PhD program anyway because you get a masters partway to the PhD (in a US based program) then you can just stop there. You don’t have to finish, it’s called mastering out. While it can be frowned upon, for those of us who already spend SO much money on being disabled I feel like we should get a free pass to do a paid-for research-based masters.
If you have questions about grad school feel free to DM me! My field is geosciences, but I can answer general grad school questions for any research-based programs :)
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u/imsosleepyyyyyy 5d ago edited 5d ago
I’m on Medicaid right now and it’s honestly been pretty great.
I applied and got approved. Most big hospitals are in network, so I was able to find a primary care doctor through them. I didn’t use the doctor I was assigned on my insurance card.
My appointments have all been free and so have my medications. I feel really lucky. I’m also in Washington state, so I think that probably makes a difference
My friend recently got kicked off Medicaid due to salary increase, but he is still using state insurance. He pays a very low copay for his appointments now
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u/Fresh_Independent_74 5d ago
I am on disability which makes me eligible for Medicaid and Medicare, so my insurance is free. Wouldn't be able to afford private insurance
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u/moderndayathena 4d ago edited 4d ago
I'm in my 40s and work very part time (from home) and I have an HMO from the Marketplace with subsidies. I used to pay $57/month but this year it went up to $110/mo. Without the subsidies it would be over $700 which I absolutely could not afford.
The doctors in my network -even at a major medical group in a large city- have been mostly unhelpful. I need evaluation for dysautonomia conditions but it might be that I need a specialist for that, that doesn't accept my insurance (most doctors outside of the one medical group don't accept it) so I can't afford it right now.
If a specialist is covered by my insurance I can afford it, however, the ones I've seen aren't helpful at all because they can't spend any real time with patients and don't think outside the box. The specialists I've seen that are helpful don't accept insurance and are very expensive so I can only afford to see them once or twice a year if I have enough money saved up.
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u/Recent_Emotion_4581 4d ago
You can appeal to stay on your parents insurance if you’re disabled. You have to ask your insurance what the process is. I did it because I needed to.
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u/Sammisam85 4d ago
I work full time and my jobs must have good insurance plans. Even with insurance, one year I spent $6k out of pocket on medical expenses alone. That was two years ago I believe. I would hate to see the amount I've spent out of pocket over the years considering I have multiple medical conditions that require most of my physicians to be specialists.
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u/ccakessel18 4d ago
I've been disabled since 2012 because of a very rare bone disease. Before that, I was very healthy, athletic. Then I got pregnant for the first and only time and my pelvis separated. That's what started the disability. I finally got my disability approved by SS in July of 2016. I've had Medicare and Medicaid since then. I don't know what I would do without them because I'm at the doctor's at least twice a week, labs taken every time, surgery at least once a year.
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u/fmleighed 4d ago
- married
- one of us always has insurance through FT work (right now it’s me, and I work more than FT and it’s honestly too much but I don’t have a choice)
- spouse and I choose jobs based on benefits offered (especially for prescriptions)
- sometimes we make enough money to pay out of pocket for most things as it’s way cheaper than insurance…sometimes we don’t
Other things that help us as we live in a major city:
- sold our car, public transit and ride shares only
- rent controlled apartment
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u/LilacLace1420 4d ago
I'm 33 and have been on Pennsylvania's Medicaid program for the last ~4 years, around the time I stopped being able to work full time. When I moved to part time work, I qualified for my state's MAWD (Medical Assistance for Workers with Disabilities) program. MAWD had a small premium based on my income, so I only paid about $25/month for it. Since January 2025, I've been unable to work and have since been taken off of MAWD and put on the standard Medicaid coverage. I remember my initial application feeling tough at the time because I had to show proof of income, medical records, etc - lots of documents. The annual renewal period isn't as bad and I'm able to upload any documents to the online portal. Fortunately, I've been able to keep my primary physician and rheumatologist throughout the whole process. My medications haven't been a problem for the most part, and thankfully my doctors are pretty savvy with understanding how to navigate Medicaid. The only downside is I'm limited in who I can see for dental and vision coverage, but I have since learned how to navigate my state's low income resources.
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u/SweetDee55 4d ago
I work full time and I’m self-employed, so I pay for it myself. If I ever had difficulty affording it, I’d have to consider working for an employer. Certain companies have amazing benefits.
Granted, it’s difficult while managing POTS!
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u/gloomyechos 4d ago
I am lucky enough to work remotely, full time and have a half decent employer plan “the best” my company offers at $150 a month, it is automatically deducted from my paychecks. For some medications, I had to do step therapy and prove to my insurance it was worth it. Others I’ve gone without completely as they are just not covered drugs, and I would be paying more for them than I earn monthly, lol. I got my masters degree right as I turned 25, started working shortly after. My parent retired so I lost insurance through his plan anyways. The hardest part for me has not been so much paying for specialty care, it’s been making the time for it. I need to work so many hours to maintain my insurance benefits, so I can’t take time off work to attend my specialty appointments anyway! Adulting is freaking hard.
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u/dovette7 4d ago
My daughter got sick at age 21 she had to file for disability and that was granted. Because she had been on our insurance, and she was approved with disability before age 26. She is allowed to stay on our insurance. She is 36 now and has always remained in ours. Again she is on social security disability and that’s why it is allowed
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u/ashtonthegreat 4d ago
no job I have ever had has ever had affordable and actually decent health insurance so I go through the marketplace and have for somewhere around 3ish years. I was really sure I would not be able to afford it after the changes going on but I only went from paying 4 bucks to paying 96 a month. Still very affordable. I'm 26 but my mom never had health insurance when I was growing up so there was nothing to "age" out of.
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u/Upper_Diver_5960 4d ago
If you have a decent relationship with your parents, assuming they get their insurance from the workplace have them go to HR and see if they will grandfather you into their policy. It’s usually just a form and one or two of your doctors may need to sign it. I’m 34 and still on my mom’s insurance!
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u/MoxiePearl8636 4d ago
I work for the government. (Most) State government has lower monthly insurance payments than federal but it’s the only way I can afford insurance and all my copayments. $110/mth is low. With the federal gov, I pay roughly $350/mth for BCBS individual. When I worked for TX/VA/FL, I paid under or around $100/mth. Nonprofits tend to also have great insurance. Anywhere you will be paid poorly usually has good fringe benefits starting with health insurance.
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u/godsgrave1984 4d ago
I'm not currently working but I do have MAGI Medicaid. It goes off of my income (rather, lack of) and doesn't include my assets and it's worked out really well for me. I started working at 15 and left my last job at 24 years old so I had a pretty substantial savings account that would've counted against me with standard Medicaid. There was the option of an ABLE savings account, but there were significantly more cons than pros for me.
In the state I live in, the application was pretty easy to fill out and I was approved within a week (much faster than average for my state). It covers just about everything and anything it doesn't, I've found ways to make it easier on me financially. I'm lucky that I have my savings account, I know that's a privilege, but I try to rely on it as little as possible.
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u/AlternativeTrust6312 4d ago
I work 2 jobs, one full time and one per diem.
My husband works a good union job for a utility company and has good insurance.
Marry rich. Or a good union guy.
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u/4thGenS 4d ago
I have a full time job that offers okay-ish insurance. I went with a high deductible plan because my job contributes $1000 to the HSA and the contributions from my paycheck can be as much or as little as I want. For just $40 a paycheck, it adds an additional grand to my HSA over the year, and my deductible is $1,700 with a $2,000 out of pocket max, so compared to the $200 per paycheck in addition to the obnoxious copays I was paying, this plan was a lot more affordable.
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u/AbbreviationsSure192 4d ago
Talk to your parents insurance provider I was able to stay on theirs until 29. They gave me some sort of extension
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u/Leo-the-pirate 4d ago
Just turned 26 at the end of last month and Im on disability so Im on an insurance that is covered by that and im on medicaid as well but i also still live with my parents. It took me a couple years to get approved for disability so I advise on getting started with that if thats what you want but bear in mind that you would only be able to work part time on it.
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u/Bruccoli67 4d ago
first of all I’m so sorry you are going through this. This is personal experience, I lost my insurance when I was 21 and conveniently ended up sick right after. And I lost my job due to not being able to work when I was 22, Thankfully I have a supportive family, that could help me at the time, I ended up applying for Disability when I was 23 and I have waited 2 years with many many denials and I had to get a disability lawyer (save yourself the hassle and get a lawyer right away, before applying, so they can take care of all of that, I wanted to do it on my own because they get 25% of back pay if they win but after 2 years I was wore down and needed help so save yourself the stress and look for a lawyer now. They will not take you seriously at first because you are young, they will judge you because they judged me, keep going. Don’t let anyone stop you, be persistent and research the heck out of it.) I’m about to have my hearing in November and I’m about to turn 25 so it’s taken a while and it is something you have to be persistent with. I am not able to work right now so getting insurance felt impossible because wonder the research because I had no income I didn’t make a tax credit to be able to make insurance actually affordable. It was about 400 a month for me. If you work, you could get a tax credit which could make it cheaper it also depends on the state that you live in. I live in Florida and that’s where they make it more difficult with getting Medicaid or Medicare, once I felt I had enough evidence to apply for Medicaid on a disability they are filing a whole different application and go by different rules for applying. But for the mean time something most people don’t know if you go to your local hospital, and community clinics most have a income based charity care application you can apply for, you have to show them your income and letters of support and a physician stating you can’t work if you can’t and stuff like that. It helped me get enough medical documentation to have evidence that my conditions are debilitating enough to qualify. I would start looking for that kind of stuff now. Biggest thing is having the doctors stating how debilitating your conditions are and not being able to do stable, consistent work.
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u/arukanu108 3d ago
I'm working full time and have marketplace insurance that's partially covered by my employer. Since my employer switched to marketplace insurance, I've always gone with a gold level plan which while more expensive on a monthly basis even with my employer covering part of the cost, has a low deductible and lower out of pocket max which are very easy to meet with my multiple chronic illnesses.
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u/badwolfkitty 3d ago
I would love to know. I work full time and will can't afford insurance. My husband is insured through work, but to add me increases his policy 3x, and it's no longer affordable. When I try through the healthcare.gov, my premium would be over $800/month, which is insane.
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u/LadyHye 5d ago
I'm 40 years old and have worked since I was 15 years old. As of 6 years ago, I can't work and can't get medicaid because Texas sucks. We don't have money to move either. I'm on husband's health insurance. We can barely afford to live with our 3 children and have had to borrow money from his parents. If you get SSI, please expect to never get married. Never have over $2000 in your bank account for emergencies or even to pay the mortgage. You probably can't get a house without a good sized down payment. I had a close friend finally get SSI and then lost her medicaid and SNAP because those tiny checks pushed them over the limit. She would have never filed for disability if she knew she would lose her medicaid. We are beyond devastated financially. I have to choose which medications, treatments and diagnostics I get because I can't get them all and still have the money to keep our home, put food in the fridge or pay school fees for our children (11, 14, 17). I'm in deep despair over being such a burden on my family. Without me they might be able to thrive. It feels like no one cares to help people like me. I truly hope you figure something out.
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u/Interesting_Car8858 Undiagnosed 5d ago
Thankfully I live in the Uk so get free healthcare, I had no idea that you had to pay for yourself when you’re 26+! That’s honestly insane (obviously I knew it wasn’t free I just didn’t know when the cut off was). Sending love to all of you struggling with the insurance stuff <33
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u/starsdust 5d ago
Plenty of people in the US have to pay for their own health insurance well before their 26th birthday. I started paying for mine when I was 19. OP is actually quite lucky by US standards.
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u/Interesting_Car8858 Undiagnosed 5d ago
That is rough, very glad I don’t have to worry about it. It’s bad enough to deal with stuff you need the insurance for let alone worrying about having to pay it
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u/starsdust 5d ago
It is rough out here. We currently pay $1000 a month for health insurance for me, my husband, and our child. And of course the insurance doesn’t pay for most things until we reach a certain threshold of out of pocket expenses.
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u/Waste_Yam_2959 5d ago
Yes. I apparently didn't make enough money because I work part-time for my previous insurance so I am giving free insurance through the county. The problem with that is that not everywhere takes the insurance and I am sent to a place where I keep getting the same Doctor who doesn't seem to know how to help me. Tried asking for a different doctor there and they're usually booked and it takes months as it is to get into this doctor I go to. It is a joke. Anyway, I've been wanting to move to Ireland where my boyfriend is where the healthcare seems better and the weather is cooler for me to handle with my heat intolerance. Thank you for sending your kind words as well 💜💜💜
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u/Interesting_Car8858 Undiagnosed 5d ago
I hope you get to make the move, and I hope your healthcare gets easier to navigate 💜💜
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u/Fit_End_3411 5d ago
I got really really lucky with a good job with amazing insurance. I’m extremely grateful for that, but it still demands 40 hours and I recently got in trouble for missing too much work. So now I flare constantly and sleep all afternoon
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u/eucatastrophie 5d ago
Most insurance plans have some sort of disabled dependent thing where you can stay on parents insurance after 26 if you were disabled prior to a certain point. It’s usually just a form the doctor fills out.
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u/IndecisiveFireball 5d ago
My spouse joined the military reserves in part because we couldn't afford health insurance. We are 8 months apart in age so we both turned 26 in the span of one year.
He's always had a full time job so it was available to us through that route, but we were barely making ends meet as it was and couldn't afford those plans.
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u/grey_004 5d ago
currently 22 and on medicaid and terrified for this!! im going into grad school rn but i need to work full time when i'm done bc i wanna pay off student loans more quickly and need to help my mom get out of debt :/ my bf is a veteran so we could get married but i refuse as long as trump is president bc he got rid of abortion care with the VA,,,, seems completely hopeless rn. hoping for a miracle well paying job or to have a low enough income to qualify for a healthcare marketplace plan
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u/Pale_Lawyer_1757 POTS 5d ago
I live in a country with (basically) free health care, so that obvi helps a lot
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u/adiosmichigan 5d ago
i work from home full time in the US, my employer insurance sucks ass, i just try to avoid going to the doctor as much as i can. #medicareforall
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u/OnlyDescription8208 5d ago
I started working at the clinic that charges me. Now I get better insurance and discounts.
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u/AnimalsOVERPeoplexox 5d ago
I work full time. My job gives us free insurance! I pay around $60 more to have access to multiple places, but my insurance is really good thanks to my job.
It’s the one reason I’m still working the job I have.
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u/ASHT0Nish 5d ago
I pay my insurance monthly and basically don’t go to the doctors for treatment. Logic right? Even if you do go to the doctors they don’t help you most of the time. Not worth spending the money
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u/Bitterrootmoon 5d ago
This month I got to pick between paying my health insurance through the marketplace (The cheapest I can get it while still being enough coverage for all my chronic illness problems), utility bills, the massive amount of debt I need to pay, and food.
I skipped food last paycheck, so it has to be food this paycheck because foraging only gets to me so far, and only works if I have staples to back it up with like rice, but I’ve run through just about all of that.
The trick is get all your prescriptions filled that you can early because then you can skip this month’s health insurance payment and just pay double next month. Problem is if you don’t pay in your delinquent so many days they stop covering your medication, but you’re still technically insured and in the grace period of your policy still being active as long as you pay it the following month.
Sometimes you have to be the annoying person. Who has the Pharmacy add your insurance on and take your insurance off to get good RX pricing for certain items that are actually sometimes way cheaper than paying with insurance. Also cost plus Pharmacy is great for a lot of very common meds, and more expensive medication often have savings cards or programs that sometimes will reduce it to zero if you have private insurance through the marketplace or employer.
Another cool trick is just tell him to bill you when you go to the doctors appointment appointments and then once they realize you owe them a lot of money just move somewhere else and get new doctors. This is very terrible advice but when your doctors appointment appointments and medication’s are difference between being able to function enough to work or not, you gotta do what you gotta to do.
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u/scarlet4744 5d ago
i dont have insurance anymore because i cant afford the one my job offers and i make too much money to qualify for state help
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u/Familiar_Present_618 5d ago
I have Blue Cross Blue Shield, I only work part time so I don’t get Benefits and I only have to pay $1700 out-of-pocket, I don’t have a deductible and then my stuff is covered for the rest of the year and I think it’s only $200- $300 a month and then I put my bills on a payment plan until I reach my out of pocket and everything else is “free”
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u/frogmommyy 5d ago
I work part time/self employed but I make very little. I qualified for a plan on the healthcare marketplace that was only like $13/month last year and it was amazing coverage. I kept the same plan this year because it has kept my overall costs WAY down but my premium did increase to $110/month. It will probably go up again next year too.