What living with a painful invisible illness under the AHCA would mean for me
Earlier this month, House Republicans voted to repeal and replace Obamacare. If the American Health Care Act passes in the Senate, 24 million people will lose their access to health insurance. Secondly, people with pre-existing conditions would also lose their coverage. We’ve asked HelloGiggles contributors to discuss how the AHCA would hurt them.
This year on my birthday — my 29th birthday to be exact — pain in my back and arms woke me from sleep. I couldn’t even open my eyes before I started going through questions that have been my constant companions for nearly a decade.
I asked myself those questions to take stock — but the truth is, those answers could all be correct and I could still be in pain.
For nine years, I’ve been dealing with fibromyalgia, a chronic illness that, for me, resulted from a seizure caused by a doctor-prescribed medication.
I am in pain all of the time — it is only a matter of how much — because my body tells my brain that it is in pain even when there is no stimulus.
Pain is actually a tool the body uses to protect us. It makes us drop that hot pan before we are burned too badly. It keeps us in bed when we have the flu so we can heal. Since fibromyalgia typically occurs after a traumatic event, like a car accident or let’s say, a seizure, my body is trying to protect me from anything traumatic happening again.
Fibro means I am constantly juggling my pain, assessing it, trying to manage it — and also living a full life around it. Fibro means that I must be on top of my medication, nutrition, stress management, exercise (not too much or too little), and sleep hygiene without exception in order to hopefully have a good day. Fibro means that I consider anything below a four on my pain scale to be a good day.
When the House of Representatives recently voted to repeal and replace the Affordable Care Act (aka Obamacare), it was not a good day.
I happened to be in a lot of pain, and it didn’t take me long to realize it was probably stress related. I’d agonized over this GOP-backed healthcare plan, the AHCA, and what it would mean for people like me living with invisible illnesses — and any non-wealthy person people with a serious illness.
For the last two years, I have used Obamacare for my health insurance. It has not only given me great healthcare, but priceless peace of mind. I’m pretty sure that many twenty-somethings don’t have a line in their budget for monthly medications, but there are those of us who do.
With the insurance the Affordable Care Act gives me, I can afford the medicines I need to be a halfway functioning person.
These medications lower the amount and intensity of my pain – but cannot demolish it entirely – which allows me to be a contributing member of society. On the whole, I am fortunate since I know there are people with visible and invisible illnesses who don’t have nearly as many good days as I do (and remember how I define a good day).
I recently spoke for hours with a 25-year-old woman. She is going through the agonizing part of knowing something is wrong with her body and trying to get the medical community to listen to her. Since I’ve been there (and was there for an entire year), our mutual friend put us in touch. I talked to her for hours about advocating for herself (studies have shown that when women our age are in pain, medical professionals are less likely to believe us, compared to male patients).
I told her that her body was trying to tell her something, and it was her job to make sure these doctors listened.
But what is the point in lighting a fire under her if the government is intent on snuffing it out?
The Republicans say that people like me don’t deserve the same healthcare as a healthy person. Conservative commentators have compared my body, with its preexisting condition, to a wrecked car on TV news. I am only my illness. I am expensive, too expensive. Don’t forget I’ve been sexually assaulted (and sexual assault-related treatments can be a pre-existing condition under their plan) and I’ve been treated for depression (you guessed it: another pre-existing condition).
It doesn’t matter that I still show up every day and engage with the world. You would think that would say more about me than my illness. You would think that kind of strength might be valued in our society.
I wonder how any of those men, our Republican representatives, cheering and toasting with beer in the rose garden after their “victory,” would deal with the debilitating pain I endure every single day.
Honestly, I don’t think they could handle it.
How fortunate they are to not know pain like mine. I wouldn’t wish it on my worst enemy. I wouldn’t even wish it on someone who wants to make this burden, this illness, I carry – mostly without complaint – heavier.