Invisible disease

I talked about my various painful experiences throughout my life in my opening post.  They include the usual things people experience – injuries, surgeries and so forth.  All acute (short-term) and all things that would heal and my life would go on with the experience leaving behind nothing more than a memory and maybe a scar.

The other upside to all of those painful experiences compared to my current painful autoimmune issues is that those were visible…well, for the most part.  Finger cut off…cast.  Knee surgeries…knee brace.  Thyroid surgery…healing line across my neck that looked like someone had tried to slit my throat.  Pregnancy and child birth…I was visibly pregnant and then I had a newborn.  With the exception of the rib fracture, there was always some visible sign of what I was going through.

I don’t want to be the center of attention.  I know that everyone has their own lives and own issues and crosses to bear.  But the problem is that not only am I not the center of attention for my painful experiences (which I truly don’t want), but it’s very, very easy for people to forget.  There’s gotta be a middle ground between “center of attention” and “everyone forgets”.

And everyone forgetting in itself is not the issue.  I don’t need everyone to be constantly conscious of my pain level.  But there are times when it would be helpful if I had an outward signal to show how I was feeling and that I had a valid reason to act the way I am.

For example, when I had my knee surgeries I was in college.  My right knee surgery was right after my sophomore year had ended and I had just moved into an apartment a roommate for the summer.  My parents had come out to help me move and to be with me during my surgery but after about a week they went back home.  After they’d left, I was sitting on the couch in the living room with my leg up on the coffee table but my knee brace off.  The phone rang (a real, honest to goodness house phone, we didn’t have cell phones yet then!) and I called out to my roommate to see if she could come answer it.  She came in with a look on her face and said “Why can’t you get it?” and then she looked at my leg on the coffee table, complete with swelling, stitches and bandages, and said “Oh, I’m sorry…I forgot!  Of course!”

We tend to cut people slack when we are aware of their pain or discomfort.  And an outward signal of that pain and discomfort helps us remember when we get busy with what’s going on with ourselves and forget – which is completely normal and natural and I would never blame any one for it.

I don’t want slack for everything.  I need and want to continue to live my life, to be a mother and wife, to continue to work.  But I would like appropriate empathy and consideration when something is more difficult than it should be for me or when I’m a little crankier than usual because the pain is worse today than usual.

But my autoimmune pain has no outward sign.  No one would look at my hands and realize the pain that I’m in.  There’s nothing visibly wrong with them.  No one can look at them and see when it’s a bad day or better day (right now there are no “good days” – just “bad” and “not-so-bad”).  If I’m not wanting to cook because holding the spoons and stirring hurts (or sometimes is even difficult because of messed up fine-motor skills that I’ll talk about another time), or if I don’t want to do laundry because grabbing the wet, tangled clothes out of the washer and putting them in the dryer is way more painful than doing laundry should be, it’s easy for people to forget that there’s a reason that I’m not doing those things.  There’s a reason that I’m not “doing my part” in the family…because it literally HURTS.

I don’t want or expect everyone to constantly be aware of my pain level (obviously I have a hard enough time giving my pain level a number when in the doctor’s office as I wrote about last time so there’s no way I communicate it on a constant basis to everyone in my life!).  And I don’t want or expect to be given a free pass on everything – I can do somethings and I want to do what I can for my family and friends.   Also, I know that it’s probably pretty vain of me, but on some level I’m glad I’m not visible injured – I don’t want my hands to look disfigured or obviously wounded.  But then again, it would sometimes be a lot easier to explain why I act the way I do sometimes if my disease wasn’t invisible.

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