The Financial Challenge Of Living With Chronic Illness

Okay, so my decision to stop taking medicines was in no way financially motivated…but since I’ve done so, I’ve noticed that there’s more money than usual in my bank account.

This makes sense, as I’m no longer spending the equivalent of a nice laptop computer, sometimes even a MacBook Air, per month! I’ve always known that I spend a lot of money on all my different medicines and health care treatments, but it wasn’t until recently–when I stopped spending a good part of this money–that I realized exactly how expensive it was to live with chronic illness.

I mean, this lesson was first driven home to me soon after I was diagnosed with rheumatoid arthritis. I couldn’t work, my medical expenses were skyrocketing (I don’t have health insurance, mind you…), and it sometimes came down the point where I actually had to decide between buying medicines, putting food on the table, and paying the monthly electrical bill. Sure, I had played the starving student more than a decade before, when I was at Columbia and Harvard…but back them, it was perfectly acceptable to be short of money at times. And if push came to shove, I could always call home and ask for some money.

Now, I was a grown adult; a person who entered into a series of very successful corporate jobs soon after finishing graduate school. For the longest time, money was never an issue. New cars and foreign trips were the norm, and I never had to worry about not having enough money in my account. Don’t get me wrong, though, having money was nice…but it certainly wasn’t what I was living for. I eventually became less and less happy with my jobs, and with all of the internal politics and backstabbing that accompanied them…so much so, that on my 30th birthday (on the exact day, I’m not even kidding) I submitted my letter of resignation. At the time I didn’t know what was next for me…I just knew that I needed something different; something that really made me happy.

Within the year, I moved to South America so that I could study historical and contemporary adobe construction. I originally planned on staying here for maybe two years (this was eight years ago), but I’ve been here ever since. Part of the reason why I’m still here is because I really like it. I love the different cultures and the snow-capped peaks of the Andes Mountains. I really enjoy the long lunches at mid-day, and the slower pace of life. I love the lower cost of living, and the fact that most items are hand-made and not mass produced.

Part of the reason I’m still here, though, it because I can no longer afford to live in the United States. Without insurance, I can no longer afford all of the physical therapy sessions, medicines, and doctors visits that I need in order to just keep moving. Yes, down here I pay for everything I that need 100% out-of-pocket, but at least it’s possible for me to do so, as everything costs only a fraction of what it does in the U.S. (One month’s supply of brand name Arava: $95.)

Soon after I was diagnosed, however, I didn’t have nearly enough money to pay for everything that I needed. In addition to already feeling like a huge failure because I couldn’t even walk, I felt like an even bigger failure because my life was one big financial mess. As soon as certain family members in the states found out about the predicament that I was in, they immediately started sending money. Accepting this money obviously helped, but it also made me feel guilty as hell. Like I said, I wasn’t a college student away at school…I was a grown adult…and it was hard to accept that I was not able to support myself, financially.

But if we fast-forward to the present, I’m happy to share that over the past year, I’ve finally been able to get back on my feet…in more ways than one. It’s taken me a while to learn to live within my new means, but now that I have, I’ve been able to take pride in the fact that I can now afford the basics, without having to choose between medicines, groceries, and monthly bills. I no longer feel bad that I can’t afford a lot of the things that I once was able to. I no longer feel guilty about accepting certain offers of financial help that continue to roll in. Instead, I’m happy with the fact that I can afford to pay for my current healthcare and costs of living…and as long as this continues to be the case, I know that everything will be okay. I might not have an iPad, or trips around the world…but I do have my health…and for this, I am grateful.

Stay tuned…for the next adventure of Rhuematoid Arthritis Guy!

19 Comments
19 comments
  1. RA Guy says:

    Connie, I’m doing quite well…if you look back over my posts of the past month or so, you’ll find what I’ve written more on the topic of how I’m feeling w/o the meds.

  2. Frantasm says:

    Thanks for sharing about the finances. Even with insurance it’s tough. My spouse & I have to live on her salary since I can’t work & we now live on food stamps & energy assistance to get by. This year we can’t afford to give x-mas presents. I had to sell jewelry yesterday to make ends meet for the month. But I’m grateful that I’m not alone, have insurance & can walk thanks to the meds finally starting to work.

  3. George says:

    Hello RA Guy,

    I don’t really understand. Isn’t healthcare socialized in the most part of south America? At least that’s what I thought. Regarding the prices thing, I don’t really understand how the meds can be that costly in US. To put you into picture, few days ago I paid privately (to be said, that in my country healthcare is socialized and it covers almost all available biologic treatments) for some bloodwork: Anti-ccp, ESR and CRP. Do you know how much it was?

    not even 50$ !!! I’ve read in some other RAers blogs amounts of hundred dollars for that. For god’s sake, how is that even possible? Who’s filling his pocket that much??? No more complain, it’s not my country and I have no rights to criticize anything. I’m really happy about that you’re handling your home financial issues that well. :)

  4. Brandy de Cusack says:

    It’s a disgrace you even have to pay for medications. I’m lucky in that I live in the UK, where medicines aren’t free exactly, but treatment is. We pay prescription charges of about £7.50 per item but I have a pre-payment certificate (costing £10.40 per month) which covers all my prescriptions. I frequently get 5-6 items per prescription which would cost around £50 if I didn’t have the prepayment certificate.

    Unfortunately, our current right-wing government would very much like to privatise our state/tax sponsored health service, and have taken the first steps towards doing so. It’s very frightening and so far only those of us who are sick understand the implications. I can’t get health insurance as they won’t cover pre-existing conditions, so any medications will have to come out of my own pocket. Quite simply, I couldn’t afford them.

    Good luck. xxxx

  5. Bernadine Grooms says:

    This year has been the hardest for my husband and I on the financial front. I was laid off from my job and placed on a list for recall if a postion opened. Now I am being terminated, since a postion could not be found for me. My husband had knee replacement surgery and we just now were able to pay the remaining balance from that. Both of us have medical issues but he is able to work full-time and we have good benefits through his job. With both have medical issues and when combined with his surgery, we met our catastrophic cap for our co-pays in early September, just before I was hospitalized to have an angiogram performed. My RA had been rather mild and in check for the last 2 1/2 years but now I’m right back to feeling like I did when I was first diagnosed. Last week my rhuemy started me on MTX along with what I already take to see if things can get back under control again. I’ve never completely been able to regain the strength in my shoulder or elbow from a surgery I had last year and live with pain as a result. My only relief many times is on-going PT throughout the year. They keep me moving and have helped to provide me some pain free days. All of this I’ve been able to do because we met the limits on our deductible for the year and so I’ve been able to afford these things. With the first of the year almost here, that will all change unless I return to the work force. Jobs are few where I live and most require skills or prior experience that I don’t have. I’m willing to learn but no one wants to hire people anymore without exeperience. So what do I give up? We’ve already cut back our cable tv to the basic channels and like others, are not buying presents for Christmas because we can’t afford to. I’m not sure what I’m going to do for work, since everything I’ve ever done before was physical in nature. I would like to start writing or blogging for a living, but am not sure how to get started. Any suggestions?

  6. PamC says:

    Wow, do I know all the feelings you’ve expressed here! I recently had an unexpected round of kidney stones on top of my normal chronic illness, and birthday money that *should* have gone to maintaining the household, got eaten up by medication and a sudden shift in short-term lifestyle. It was a gift, and now I feel like I’ve squandered it, even though there was nothing else to do but spend the money where it had to be spent. If the foundation of health isn’t there, the rest quickly doesn’t matter!

    I’m glad you’ve been able to come off of medication that wasn’t helping! I have a sneaking suspicion I’m on one medication just to set the doctor’s minds at ease that “all efforts are being undertaken…”. Still, it means that they are continuing to try and take care of me. They haven’t kicked me out with: “We have nothing left for you.” I am being moved forward in care. That means a lot.

    Still, I know right now more than half of what I receive goes to medication. My family is why I’m able to live in a place where I physically feel better. I am blessed there.

    Thank you for sharing this.

  7. RA Guy says:

    @George, the country where I live does have some social programs, but a majority are on private health plans.

    It’s funny, that I made the decision to stop my meds after money was no longer an issue. For years, I’d manage to scrape together just enough money to get all of the meds I needed each month, in addition to all of the additional health care services that I needed. I wonder how much no longer having all of these financial concerns is helping me at the moment, in terms of no longer having this major stress trigger.

    @Pam, I know that feeling, of just wanting to finally–for once–spend a little money on something else, only to have to spend it again on healthcare. It used to get me a little down, but then I had to remind myself how fortunate I was to at least be able to pay for what I really needed.

    It sounds like a lot of us have faced and continue to face financial challenges due to our chronic illness, and I’m sure that the current state of the world economy isn’t helping either. For me, at least, it’s been an opportunity to downsize, eliminate some of my consumerist habits, and learn that some of the finer things of life don’t always require money to be spent.

  8. Lene says:

    it’s funny how we can share very personal details about what’s going on with our health, but being open about just how hard it is financially is just Not Done. I’ve never said anything publicly about how close I am to the edge because of everything I need (prescription medications, over-the-counter medications, wheelchair repair, automatic door repair, etc., etc., ad nausea). Instead, I make jokes about being a starving artist.

    This week was the first time that I have been open about it. Being a spokesperson for the Health Council of Canada gave me the opportunity to share how expensive it is to have a chronic illness. It’s been a bit nerve-racking (apparently, somewhere within, I still don’t think one talks about money). Mostly, though, it’s been incredibly liberating.

    how’s it going without the meds?

  9. RA Guy says:

    @Lene, seeing your participation in the Health Council of Canada motivated me to open up more about this issue. There certainly is a stigma associated with speaking openly about being in financial straits, and this was just one more thing that weighed heavily on me a few years ago when I was (not so successfully) dealing with many different challenges.

    I guess I’ve just gotten tired of the overwhelming media message that people who are struggling financially only have themselves to blame. (Just look at the social security/medicare discussion being held in the U.S.) I’d love to see some of these talking heads and politicians try to balance all of the chronic expenses that we incur, all the while living with limited mobility and (quite often) reduced incomes. This is just *one* more area of awareness that needs to be raised, and I feel proud to be following in your footsteps!

    I’m doing quite well at the moment, as I recently shared on FB I’ve gone 6 weeks without a flare, more than doubling my previous best of 2011 (which was 3 weeks, a few months back.)

  10. Tracy Pierce says:

    I can certainly relate to the finacial burden of RA. Back in 1998 my husband and I built our home and our plans are that this is going to be our only home. The home we make memories in and watch our kids grown up in. At that time we both worked. We made ok money. We were not rich by no means at all but we could pay our bills. It wasn’t until after my daughter was born when I was 22 that RA reared its ugly head and started making it very difficult to work full time. Money has been a serious stuggle ever sense. Expecially since i am not able to work anymore. I often have to turn to relatives for help and it is embarrising for me and I HATE taking it but i can’t turn it down because i am in need of food and essentials. (forget shopping and trips like normal women and married couples do) I have went very long periods with no RA meds which has caused my RA to flare out of control. I am finally getting my medicare from my disability and can get back on Enbrel again. Ibuprofen and percocets have been my best friend and worst enemy both lol

  11. marianne hoynes says:

    I am unable to afford an RA treatment drug. I have been thru the MTX,NSAIDs, Arava, and other affordable drugs, none of which my body tolerates. My body does not tolerate steroids without turning me into a crazy person with just a few milligrams. I also have Sjogrens and Fibromylagia. I did do just under a year of Orencia which almost took my house, and 8 blessed months on Enbrel, when my doc was able to give me free samples, which allowed me to walk and functin almost like a healthy person. now I live on pain pills. And I have Medicare, the gold standard of American Health care. I have been to testify on Capitol Hill with the American College of Rheumatology. I post on facebook all the time about HC, I even Occupy Wall st. I have spoken to my congressman personally, none of which help me. I have Medicare – yep! I’m insured, and cant afford a biologic drug. I cannot get a secondary, or medicare advantage plan, because I’m considered too high a risk. Every year I apply – every year I get turned down. And in the US we have a law, passed in the 1980′s to prevent the drug companies from influencing Medicare, that if you are a medicare patient (without MEDICAID), you cannot get extra help from the drug companies for your prescription drugs. I dont see how allowing people to live MORE disabled, saves money. I dont understand how turning people into prescription pain addicts saves money, or makes for a stronger society. Thanks so much for this post. Trying to afford treatment is such a chronic illness issue.

  12. Joie says:

    Marianne,

    I’ve noticed how many of the manufacturer’s of anti-TNFs financial assistance programs are not open to those on Medicare. Why is that?

    I’ve also read about how RAers on Medicare, often can’t afford high premiums for Medicare supplemental plans or Medicare Advantage plans, or, are turned down for having a pre-existing condition. Drug coverage is another problem – injectible biologics might not be covered or could be classified as Tier IV drugs – Tier IV drugs can cost hundreds of dollars a month.

    If you are having trouble affording the prescription meds you need, look into this program – the Patient Advocate Foundation’s Co-Pay Relief Program:

    “Patient Advocate Foundation (PAF) is pleased to announce that it has received a $9.3 million contribution, from an existing partner, providing further support through its Co-Pay Relief Program (CPR) for patients suffering from nonsquamous non-small cell lung cancer (NSCLC), breast cancer, colon cancer, rheumatoid arthritis and hepatitis C who are unable to afford their medical co-payments. These funds are currently available to qualified patients.

    PAF’s CPR Program provides direct financial support for pharmaceutical co-payments to insured patients, including Medicare Part D beneficiaries, who financially and medically qualify.”

    http://www.sacbee.com/2011/12/09/4112424/patient-advocate-foundation-announces.html#ixzz1gJ8mvIDv

    Social Security also has a program called “Extra Help” that helps with prescription drug costs:

    “Anyone who has Medicare can get Medicare prescription drug coverage. Some people with limited resources and income also are eligible for Extra Help to pay for the costs – monthly premiums, annual deductibles, and prescription co-payments – related to a Medicare prescription drug plan. The Extra Help is estimated to be worth about $4,000 per year. Many people qualify for these big savings and don’t even know it.”

    For more info, see:
    http://www.ssa.gov/pubs/10525.html

  13. Deb aka abcsofra says:

    It is a sad state of affairs in the US regarding health insurance and unfortutanly it will continue so unless we find a way to get special interests out of Washington DC. I hope your decision to discontinue your meds brings you continued relief. I gave up the heavy duty meds years ago and believe that although my ra will never go away that my other health issues improved (side effects). We all walk a tight rope in managing our ra between trying to balance the financial impact, the side effects, the possible long term impact of ra with no meds…the list goes on and on. I wish it was more clear cut for all of us but as of yet, none of it is. We can only hope that the decisions we all make work for us.

  14. Joe Faulk says:

    RA Guy…

    I just got a note from Social Security saying that my monthly disability payment will go up. 3.6% and my Medicare premium will go down $11.00 and I am thrilled! I make in a month what I used to make in a week and I thank God everyday for it. About 65% of my monthly budget is medically related. I just went through some neurological exams including a MRI of the brain, a MRI of the neck, pulse doppler ultrasound of the arteries to the brain, a brain stem study and, finally, a nerve conduction study all to try to find why I am having seizures. The result of all these test???? I am dehydrated!!! Heaven knows how much I am going to have to pay for finding out I need to drink water. Funny.

    It seems here in the US that politicians are always looking to cut Medicare and Social Security. It is frustration to see the threats to programs for those who have the greatest amount to lose from these cuts. Never once have I ever heard of a public figure doing without their salary or benefits so the elderly and chronically ill could have more!

    Nuff said.

  15. naomi says:

    Thankfully I live in Ireland, and as I am unable to work due to arthritis I am entitled to free medical care including all my tablets, the most I pay is 10euros a month! I wouldnt be able to afford any treatment otherwise as its so expensive

  16. HayWire0831 says:

    Shoot, I’m going to come be your neighbor! You’re brave to halt your medicines like that. I’ve kicked that idea around too. I’m just terrified of joint damage and I’m under the impression that joint damage is inevitable when you have RA and go untreated. Still learning!

    This post, on the other hand, sickens me because the “healthcare” in America sickens me and to hear about this kind of cost difference and availability in another country just makes me wonder why the HELL America thinks they have to beat up on sick people for money. Capitalism, I guess? I don’t know. Just sickening!

  17. kim says:

    you are my hero as of late!
    Thanks for the blogging, as it feeds my hope and supports my faith in this ever changing RA adventure-
    I salute your courage in going med-free, and am very interested to see how you do without them, and how you feel/fare overall-
    my RA journey seems to be about going it med free- and I’m going to give it everything I’ve got-
    Happy holidays to you-
    k

  18. laura lake says:

    I thank heavens I work for Kaiser Permanente and although I only work part time, I get insurance. It covers Humira 100%. Without it, I doubt very much that I would work at all. On days I work, it is all I do that day- I come home, lay down, get up to eat dinner with the family (that someone else makes) then lay down again until bedtime, at which I …lay down. When I work 2 days in a row, I have to rest most of the third. (I can’t work 3 days in a row), So, my part time job actually takes me 40 hours a week! But, if I didn’t have it, it would be over for me. When I get discouraged, I just try to remember how lucky I am, and when I get panicked, I try to not think about it.

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