This is a somewhat odd reflective rant but bear with me
Last night I couldn't find anything on tv and, despite my disdain for reality tv, found myself half watching Shahs of Sunset while writing. Most of it was a bunch of superficial crazy and lots of drama, the gold standard for most Bravo shows but one storyline really caught my attention. There is a girl with RA, which like MS is a progressive autoimmune disease. I don't know much about RA, or her story with it. I don't think it really matters for the purpose of this post. But there were a few things about it that hit home for me.
1. The fear, uncertainty and confusion of navigating more aggressive treatments when other options have been exhausted
2. The desire and even need to maintain normality in daily life, even to the detriment of your health, be it wearing heels and partying or simply going to brunch with friends and the isolation when your best attempts fail
3. The general lack of understanding and disbelief of those around you in how good or bad your health is at any given moment based of how you look or act because the disease is very much invisible.
I think the last one hit hardest. Her friends and family questioned her illness and its severity as well as her treatments and chemo. They accused her of being dramatic and over exaggerating to garner attention and sympathy. Maybe she is. Again, I don't know her or her story. That's between her and her doctors.
Let me just tell you that, as I sit here at my oncologist with a needle in my arm receiving my monthly chemo treatment for MS, chemo is a very real treatment for autoimmune diseases as a disease modifying treatment. It's kept me in remission for nearly 2 years now and hopefully indefinitely into the future. Remember, there is no cure for either RA or MS or a handful of other progressive autoimmune diseases. Let me tell you that just because I look fine, I may not feel fine. That my monthly chemo does not affect the crazy amount of jewfro hair that is currently out of control in the NYC summer humidity. That if anything, I underplay my health, not exaggerate because no one wants to be the sick one and it gets old after awhile for both me to tell and for you to hear. That I am not lazy. I don't want to be a homebody but it's not always by choice. Believe me, I'd much rather be out and about conquering the world via the path less traveled. Quite frankly taking care of my health can be rather boring and lonely.
This isn't a feel sorry for me I'm sick pity post. Through hard work, a little sacrifice, modern medicine and a great team of doctors, friends and family, I'm actually doing quite well. It is a request to reserve judgement and if you don't understand, ask questions. I've long been somewhat paranoid that the same conversations and skepticism go on behind my back but I will gladly answer questions if you just ask and I know many others feel the same way. Consider how you would feel if the tables were turned.
End rant. Happy solstice Monday ladies and gents.