Getting the proper medical and health care that I need has been a struggle since I first got sick in 2010. I was lucky then to have a support team who helped me, even from afar, navigate the mysterious landscape that is MECFS (myalgic encephalomyelitis / chronic fatigue syndrome). And as I got sicker many people stepped up to help when I needed it most. But time fades all.
There is only so long, and to a certain point, that people can help, no matter how much they love you or care about your well-being. People burn out. They run out of time and money and mental bandwidth to lend to even the most beloved person in their life.
The unfortunate reality for myself, is that I’ve been sick long enough that people have stopped helping and it shows. I’m sure they still care, but a detached version that allows them to still sleep at night while I remain awake at 3 AM writing a cathartic blog post. Ahem. Who me? Sigh.
Don’t get me wrong, I don’t feel entitled to anyone’s help, but I certainly feel discouraged when I need things that can’t be accomplished by my own doing or that of someone I know. I’m talking about things I need, not far-fetched wants.
This is the problem and I don’t fault anyone. It is a fucked up situation, and a helpless one for me.
The people I depend on most are overworked and overstressed and deserve to relax and not have to cater to the needs of someone as sick as me. But when they don’t my needs remain unfulfilled. It is a paradox and a reminder to me that this is my fight, at the end of the day I’m in it alone. And I have never felt more alone than this very moment.
Then there are the people who think they help, but don’t. Or the people whom I ask for help, but politely pass the proverbial baton to someone else, or to the universe, or to some old father figure in the sky of whom I don’t believe in. But what irks me most is when I ask for what I need — medical care (the AHCA isn’t going to help — I need Medicaid, sorry folks!) and caregiving (not a Ferrari or a mansion) — and then I am made to feel guilty because I asked. It’s not my fault that I need help. Trust me, I am the last person to want help and perhaps it’s a lesson for me to have to ask. But I still dread it,
So this is all to say one thing: I’m over this shit. I’m so tired of hoping someone or something is going to come along and make my situation better. And the hardest part is I know it is a manageable situation. All I need is a kind and intuitive caregiver for six hours a day. And I need a nurse. And a doctor. And a “vampire” to draw my blood. And a cute woman to snuggle with me at night. And some good books to read. And a new a episode of This American Life every day. And unlimited kombucha and Cliff bars. Sounds like a party, right?
Okay, vent session over. Thanks for reading. Hopefully things get better for me and the people I love. But even if they don’t, just know that I appreciate that you read my blog. Oh, and please check out my latest essay for Mic.