Chronically Awesome

I am an open book, I always have been, I always will be. My mom used to joke that I was the only teenager who told her too much about my life.

I've never had a problem with being open about my mental illness, even though I was taught that it was something to be ashamed of, something I should strive to hide. But sharing has helped me connect with people, and connecting with people reminds me that I don't struggle alone. And that has made a world of difference in my life.

But talking about my physical health is a lot more difficult for me. This blog has actually helped me be more open about it than I ever have in my life. Then again, me starting up this blog coincided with my Gastroparesis diagnosis and subsequent treatment, and it's all been too major not to mention.

For many years now I've struggled with Hashimoto's (autoimmune) Hypothyroidism, GERD/ Gastroparesis, a pelvic floor disorder, and a TMJ disorder that causes constant tension headaches. I also have pain and weakness in my wrists and fingers but I'm going to ignore that for as long as possible. ;) I've also had two sinus surgeries (a septoplasty and a turbinate reduction) and a tonsillectomy. Oh and at some point they took out my appendix too. There's also the hypersomina... oh the hypersomnia!

I had a physical last month, and my doctor (my general practitioner) told me "you have such a great attitude for someone who is so sick." And that struck me, because I never really saw myself as sick. At least not physically.

That's not to say I don't feel sick, I feel fucking TERRIBLE all the time, but I always attributed these issues to personal failings as opposed to actual diseases/ conditions. I'm nauseous all the time because I have no self control when it comes to food. My hair falls out because I don't get enough vitamins. My muscles are clenched all the time because I have an uptight personality. I'm tired all the time because I'm lazy.

Except, I'm nauseous because my vagus nerve is partially paralyzed and my stomach doesn't function properly (and I never feel worse than I do after eating veggies.) My hair falls out because I have autoimmune hypothyroidism (my vitamin levels are fine.) My muscles are clenched for god knows what reason but I can't control it (really I'm not that uptight!) And I'm tired all the time because all these goddamn diseases (the mental ones included!) zap my energy.

Of course, the tricky thing about all these diseases are that they're invisible. And to a lot of people, certain members of my family included, invisible means not real or easy to solve. It doesn't matter that my blood tests show erratic thyroid levels and high inflammatory markers, that a nuclear gastric emptying study showed a significant delay in stomach function, or that physical manipulation of my muscles/ joints have shown abnormality. When you look fine, you're supposed to act fine. And I try to, I really do.

But there's a reason why every room in my house is never clean at the same time, why the laundry piles up, and why I can't make dinner every night.

I'm chronically ill. In fact I have multiple chronic illnesses/ diseases. And I need to stop hating myself because of that.

When I say that I'm chronically ill I feel like a kid trying to join a club that she's not cool enough for. Or in this case, sick enough for. To be honest, I feel like a fraud. There are countless people out there who have it MUCH worse than I do- I am acutely aware of that. And I am endlessly thankful for the moderation of my illnesses and the pieces of me that are healthy.

But I hate myself for being sick, precisely because I can't admit to myself that I am sick. People say that you should never have excuses, but what does that even mean? What's the difference between an excuse and a explanation aside from unfair stigma. All my life I've believed in the "bootstraps" mantra to a certain extent, but everybody is only able to pull up their straps so much. Everybody is doing the best they can.

I am doing the best I can, and dammit that is going to be enough.

1 comment:

  1. "But there's a reason why every room in my house is never clean at the same time, why the laundry piles up, and why I can't make dinner every night." Great post- this in particular really spoke to me though.

    You really are a trooper for all that you deal with.. surgeries, chronic issues/pain plus lets not forget the kiddo. That is A LOT! I'm glad that you're giving yourself some credit, but are still thankful for the good things you have going :-).