Becoming Visible


For the most part, my illnesses are invisible.  I’m not in a wheelchair, I don’t need to walk with a cane except on rare occasions, and I don’t have visible deformities.  I’m the type of person who gets dirty looks when I use my disabled parking tag.  There have been huge (massive, really) changes in the way I look since my onset, but only people who knew me before would know that.  People seeing me for the first time would probably just see a fat woman, unless they’re really familiar with the distinctive look of steroid puffiness.  (I find that I can now spot it on other people.)  And although it rankles that most people who knew me before probably just think I’ve really let myself go in the past few years, I appreciate the fact that I can choose whether to disclose my illness or not – it’s not obvious.

But now…

I’ve written before about the fact that I’ve now been diagnosed with adrenal insufficiency.  This is probably a direct result of the RA, in one way or another – whether it’s because of prednisone overuse or because my adrenals have been attacked by the RA isn’t clear at this point.  (Probably the prednisone.)  But the bottom line is that because I have shown no improvement in the two months since it was discovered, I am now on hydrocortisone, and will be for quite some time.  And since adrenal insufficiency is a dangerous thing to have, it means that last night I had to buy one of these:

medic alert  

Yes, I know that lots of people wear these – most diabetics have one, and people with things like peanut allergies wear them too.  But can I be honest here, and tell you how much this step bothers me?  It announces to the world, “Something is wrong with me.”  It takes something private and makes it public.  It takes away a small piece of my choice – I know that I still don’t have to discuss my illness with anyone, but I can no longer pretend I don’t have one.

And yes, most people are pretty unobservant, but I teach piano.  I sit right next to students and they look at my hands.  There is no way they won’t see this.  And I just don’t want to talk about it.  I’ve worked hard to keep my health situation private at work, and I plan to keep on doing so.

I just feel as if another little piece of my “normal” has fallen away.

Yesterday I had a long, long, conversation with my husband (okay, more like a vent TO my husband) about feeling as if there’s a sharp dividing line in my life between the old me (pre-RA) and the new me.  My husband and I have been married for three years and four months, and we dated for two years before that.  Next week marks the three-year “anniversary” of my diagnosis, and for some reason, this made me realize that we are past the tipping point – he has known me for longer with RA than without it.  I wonder if he even remembers me the way I was.  (He tells me that he does, and that he still sees so much of the “old me” in me today – isn’t he sweet?)  But it really, really bothered me to realize that the dividing line is getting farther and farther behind me, and I feel as if all of my achievements, all of the good things about me, are behind it.  I don’t know why, but this bracelet just feels like a symbol of that, a visible daily reminder that I am not who I once was. 

In one of those weird acts of synchronicity that frequently happen in blog-land, I saw this post from RA Warrior yesterday, AFTER this conversation.  And it was comforting.  It reminded me that whatever I am feeling, whatever I go through in this crazy funhouse called autoimmune disease, someone else has been there too, and understands.  And that may not make it all better, but it sure helps.

P.S. – I recently saw a friend that I haven’t seen since the summer, and finally told her about my RA.  She said, “Yeah, you really looked sick last time I saw you – I wondered what was wrong.”  So much for my cloak of invisibility!

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  1. Cathy says:

    The other day a friend was visiting that I don’t see often. She seemed surprised when I shared the stuggles I experience with this disease. She said she knows of others with RA but they seem to be doing okay. As she was talking I felt overwhelmed by all that has changed for me personally and realized that to many it seems like we are doing okay. We go about our normal life and do the best we can but so much is changing for us. We are not only experiencing pain but also the fears of what will become of us with this disease. For me, I struggle with not being as active as I would like. We struggle with our bodies changing (weight and deformities). We struggle with the meds we take, we struggle with our emotions, we struggle with so much that doesn’t show on the outside to people immediately. Reading your post I felt so connected. I understand what you are saying. I am glad your husband still sees you as you were before. Take that and hold onto it. His words are important because even though you are changing in many ways because of this disease, deep down you are still the same person and it is good that others see you that way. I don’t know you personally, but from your posts, I see you as a strong person. Your strength is going to find you.

    Thanks so much for the words you have left on my blog recently. They have been read and reread many times. Knowing that others are going through this with me helps so much.

  2. Helen says:

    I went through the whole long, messy process of cardiac diagnosis during my first year of grad school. I remember being absolutely shocked when, at the end of the year, I finally opened up about it to a professor and explained that things were starting to get better. She said, “Yes, you’re looking better now, too – you looked really ill for a while.” I’d had no idea.

    I also wear a medicalert bracelet with details about my defibrillator. It was a difficult step to take, and I still wonder what people are thinking when they see it.

    I think the most important people in our lives are going to think what your husband thinks, though – that the “selves”, the ideas and the emotions that shine through all of the outward junk are what matter most. That stuff stays no matter what.

  3. Lana says:

    While I do like keeping my condition private, I do advocacy work and well – so much for private, but I enjoy that so no anonymity there, I suppose. I think it would be easier if RA was understood like other diseases – cancer, diabetes, etc. It is not always a question of visibility because people will see what they want to see.

    “People seeing me for the first time would probably just see a fat woman, unless they’re really familiar with the distinctive look of steroid puffiness.” – I have thought that so many times about myself. However, I know who I am and RA is a part of that. I am not saying that I have magically and wonderfully accepted this, but the stiff upper lip appraoch keeps me sane. There are many times where I have to remind myself to let things go. That is all we can do.

  4. Amanda says:

    I do the complete opposite. I’m so uncomfortable with how I look and the way I now move and all of my other limitations that I find myself telling people I wouldn’t normally bother with my condition. I want to shout “This isn’t the REAL me!”.

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