Accidental Invalid

I was accidentally copied on an email the other day, and I had been debating whether it would be better to address this topic directly with the sender, or in public.  I did take it up with the sender, but I think this is a matter worth discussing in public, too.

The substance of the message in question had to do with the fact that I looked “fat in the face,” and suggested that I was a “drama queen” for ever talking about living with a chronic illness.

As if “sick” were an abstract concept instead of my reality.

As if “sick” were an excuse or a distraction.

As if I have ever used “sick” as an excuse in the first place!

As if my reality of periodic courses of steroids, and weird rashes, and injections, and…stuff…is any fun, and I am not horribly self-conscious about it.

I have Rheumatoid Arthritis.  I was diagnosed 8 years ago this Fall.  It is considered moderate-to-severe, and I am a medical marvel; a statistical aberration because my prognosis was not good from the outset.  I take massive amounts of drugs, and submit to an incredible amount of testing, and rigorously follow medical advice.   I take a wholistic approach to managing the disease — I see a nutritionist; I practice yoga; I stay fit; I monitor my sleep and my hydration and every other non-medical metric I can keep an eye on.

This is my reality:

morning regime

It took me a long time to accept this Thing, but I’ve wrapped my head around it now.  I think it’s much harder for the people around me, because I present such a healthy front, and they don’t necessarily see me in the morning when my hands are too stiff to grasp things well.  And they don’t necessarily notice the work-arounds I’ve developed over the years.

I didn’t do anything wrong.  I didn’t ask for this.  I didn’t bring it on myself.  I couldn’t have done anything differently.  I can’t control it.  I do everything I can to mitigate the symptoms, and prevent the flare-ups, and keep it from getting worse.

But I don’t have a ton of control.

And sometimes, my joints are stiff.  And sometimes, I am covered in hives.  And sometimes, I’ve had to take medications that have made me sick, and made my hair fall out.  And my legs are covered in marks from the injections I’ve had to give myself so I feel self-conscious in a bathing suit.

However, my life is not yours to judge.  Nor, for that matter, is my puffy face.  We’re all carrying our own burdens, guys.  We would be well served not to make each other’s heavier, and our walks harder.

3 Comments

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  1. I don’t know who you are, but I have EDS and I understand. I wish I could hold your hand or hug you. Wishing you the best and good on you for not letting them bring you down.

  2. A patient came in the other day and showed us a product she uses on her arthritis. It’s Celadrin and it’s a cream. She said she used to get it out of Canada but now see’s it’s for sale on vitacost.com. She let me rub some into a very sore thumb joint I have and the pain was gone within a minute or less. Thought it might help you. Marilyn

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