According to Reuters, the Trump administration is going to allow states to implement work requirements for Medicaid recipients. I live in Indiana, one of the states considering implementing the work requirement.
I know this can be a complicated issue, so please allow me to explain why this is a bad idea.
I know that most of my friends know about my health and the struggles I have faced with it, but I’m going to explain everything for those of you who do not know me personally. I am not doing this to complain. I am not doing this because I want attention. Please do not comment with pity or anything like that. Support is welcome, but I do not want pity.
I have a congenital condition known as Panhypopituitarism. Due to a birth defect caused by random factors that are completely unpredictable and not understood just yet why they happen, my pituitary gland was not able to develop properly. Because of this, my body lacks the crucial ability to secrete and regulate hormones and some of the bodily functions related to them on its own. There is treatment, thankfully, but it is not a cure, and there is no way to cure this condition. Treatment is imperfect. I take a number of pills and an injection every day to replace the hormones my body is lacking, and this keeps me alive. It does not completely mimic the natural hormonal functions of a normally healthy person, so there are times throughout my daily life when I am not getting the necessary amount of hormones I need at that moment, causing some debilitating symptoms. Adrenal insufficiency is the biggest complication of this condition, and it can be fatal if not handled properly. On top of that, the other complications that are a part of this condition are; hypothyroidism, hypogonadism, adult growth hormone deficiency (this hormone is necessary for cell regrowth and regulating of certain bodily functions), insulin resistance, a multitude of vitamin deficiencies because my body does not absorb nutrients as well as it should, and a weak immune system due to all of the aforementioned complications. On top of all that, I am also legally blind (not entirely blind, thank goodness. I need to be able to do my art!), and my bones are so weak, I have already been diagnosed with osteoporosis even though I am only 27. Not osteopenia. Actual osteoporosis. That is thanks to my body’s developmental issues as well as my body’s difficulty absorbing calcium.
I am thankful that I was not rendered mentally handicapped, as some with my condition are, but my physical health is greatly compromised by all of these issues. I try my best to stay on top of my health and I work with my doctors regularly to find the right treatments and track my body’s progress. Treatment is hit-and-miss, and often a months-long guessing game to find the correct balance. My specialist even said that being a patient is my full-time job. I am acting as my own pituitary gland, and she agrees that I am unable to obtain gainful employment with the way my body is.
The symptoms I experience range from mild to debilitating, and there is hardly any warning when I am going to experience fatigue so extreme I have no choice but to rest, or vertigo so intense that I can’t even stay sitting up without feeling nauseous, weak, and shaky. I also have to deal with factors such as sleep disorders and depression as a result of my imbalanced hormones. I do my best to treat them, but again, treatment is a guessing game, and not a cure.
Never underestimate the power of a hormonal deficiency. One by itself is bad enough. Ask any hypothyroid patient how bad it can get.
Now, imagine having ALL of your hormones out of order with no cut-and-dry treatment to fix it, and no other way to determine which level is off without a battery of blood tests which may or may not be accurate due to a litany of other factors.
Some days, I feel fine! On those wonderful but rare good energy days, I can even go out and ride my bike, go for a walk, or even do light aerobics or yoga! I still have to pace myself even when I do get to do these things, or my body will “retaliate”. i.e., I ‘ll spend the next few days so symptomatic that I can’t do much but rest.
Again, never underestimate a hormone deficient body.
Despite my specialist’s support for my disability claim, I have been denied disability twice. My condition is rare, and not well understood even by many medical professionals, so it doesn’t look so great on paper. I have an attorney who is helping me get scheduled for a court appearance to appeal in front of a judge, but I was told that I might not get a court date scheduled for an entire year. I am lucky to have a supportive fiancee who is able to work, because without him, I would have no help whatsoever, aside from medicaid. If it weren’t for him, I would have next to nothing. (His work does not offer insurance to its employees or their families until they have been there for a year, which he has not just yet. Even if I was covered under his plan, the care I need would not be affordable for us.)
I am grateful that I can still get medicaid while I am in this period of not being seen as disabled by the government, but clearly unable to work. I have tried to work twice, and both times, I had to quit because of complications with my health. The last time I tried to work, I suffered an adrenal crisis from my body’s weakened state along with a simple case of bronchitis, and I had to spend the night in the hospital on an IV drip. Since that happened, my overall health has declined, which I have been told is normal after an adrenal crisis. I can’t risk doing further damage to my body by attempting to work again. I did try, and I saw the results. I am disabled, and I know I will have a successful court hearing, but in the meantime while I wait for the bureaucrats to catch up on their paperwork, I am seen as an unemployed, able-bodied individual… on paper.
So, if Indiana adopts the rule for medicaid that requires recipients to work, I will be faced with this cruel decision:
Go to work and cause further decline in my health until I wind up in the hospital again or worse,
Do not go to work, stay home and rest, but have no health insurance to cover the cost of the medical treatments I NEED in order to stay living.
– I take a number of prescription medications daily, and I need to be able to afford a doctor that can prescribe them
– One of my most important medications would cost over 2,000 a month without insurance (there are financial assistance programs available to help with the cost, but even then, it can cost $100 a month or more.)
– I have to see my specialist at least once every three months.
– I have to get blood tests every few months to check my levels.
That adds up over time.
I am aware that my existence costs my government a lot of money, and believe me when I say I deal with the guilt of this daily. I even had a literal nazi tell me once that I should just die and save everyone else the money since without medical assistance, I would be dead anyway. I know it’s cruel and ridiculous, but what they said still gets to me sometimes, and the fact that I know there are many other people who share that sentiment just breaks my heart.
The simple fact is without the help of medicaid, and disability eventually, I would not be able to afford to keep myself alive, pay the bills, eat every day, and not be in crippling debt.
Imagine being in my shoes and having to live with the fact that you are a leech on society because you can not work. If I could work, I would. I loved my job at Kroger. I wish I was able to go back to my awesome co-workers and bosses. I felt at home there, and it breaks my heart to think that I can’t do even that simple damn thing that every adult can do. It kills me to not be able to work, so don’t think that I’m just some welfare queen leeching off the government because I want to sit on my ass all day.
Requiring medicaid recipients to work will not fix the problem of lazy people, but it will put undue hardship on people like myself, as well as folks in poverty-stricken areas where work is hard to come by, and the elderly who don’t quite qualify for coverage yet.
It is so incredibly cruel to deny anyone life-saving care because they can’t afford it, whether they are working or not.
In short, Indiana legislators, have a heart.
Please, Indiana citizens, call your representatives.
If you feel like this should be shared, go for it.
Thanks for reading. Don’t be afraid to ask questions if you have any. I am happy to do what I can to help educate people.
2 thoughts on “Medicaid Work Requirements Incoming”
I’m going to do that thing where I lecture someone else about something that I have difficulty believing about myself 😉
YOU ARE NOT A LEECH ON SOCIETY. OK? You might not be physically able to go to work, but your value as a human being is not contingent on your ability to fit into an inaccessible system of employment or your ability to be paid for being part of that system. If you can’t do it, you can’t do it. You’ve tried and you couldn’t.
There are so many ways for people to contribute to their community (and by ‘their community’ I mean ‘whoever they interact with’, not even specifically people in your immediate environment) and by talking about your condition, by speaking up and educating people (I’d never heard of panhypopituitarism before I read your blog) you are doing something worthy and valuable.
I know it’s hard as hell to drown out the loud and shitty capitalist voices that tell us we have to live in a state of constant apology for being disabled, but please know that you are wonderful and you have nothing to apologise for ❤
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Thank you so much. That means a lot to me. It’s really hard to get past all the years of being told that not working means laziness.
I didn’t mention it in this post, but I do a lot for my community. I use what energy I do have to do things that benefit my community. Over the last year, I have been organizing an event to raise money for a homeless shelter to be built in my town.
Yesterday, I even spoke with our mayor about it, and he seemed to be impressed with my work on this, and praised me for taking initiative. That felt pretty damn good.
Despite that, it’s still difficult to accept my own limitations, and it’s even harder to cope with the cruel voices of people who believe I should not receive disability.
Ever since I’ve become vocal about my condition, I have experienced the best of people (people like you), and the worst.
Despite all the hell I go though because of this, I feel like I’ve experienced something so rare it’s worth celebrating.
Oops, I rambled. Haha
Anyway, thank you so much for your kind words and support! ❤️