“But You Don’t Look Sick”

That’s the refrain I hear all the time, and it’s certainly what other people think.

I’m not pregnant, so my doctor’s appointments and therapies aren’t considered a matter of survival as they are for my pregnant co-workers’.

I don’t have a limp, a cast, a wheelchair, a cane, or some other obvious mobility impairment, so my join pain isn’t considered devastating to my daily comings and goings or ability to do my job sitting at a computer for hours on end.

I look tired, but that gets many “wait ’til you have kids!” responses if I dare mention it or try to explain fatigue.

To anyone else at the gym, in a waiting room, or in the grocery store I look normal and functional.  My CFS and joint pain/autoimmune disease is sometimes as debilitating as all those conditions above, but I must live up to the expectations of all the other “normal” people each day.

It’s confusing and hurtful to see and hear others brush off what is a real issue for me.  Daily life for me and for all the others suffering from chronic pain and disease is barely manageable at best and almost stifling in its complexity, frustration, and pain at worst.  Not to mention, the pain causes depression and anxiety, and may also prevent adequate sleep (a real and aggravating issue when one also has Chronic Fatigue Syndrome).

I used to be the best in school.  I still had to fight with chronic infections and with the pressure I put on myself, but I studied extremely hard to make sure I aced exams and completed homework.  In fact, in my years of study I only missed one reading assignment the week of midterms.  I devoured books, both for class and at my own leisure.  I could remember movies and made lists of the ones coming out I wanted to see.  I met friends for coffee or meals frequently, and actually didn’t have to cancel.  I made sure my room or flat was clean, did my laundry in a timely fashion, and kept my living space functioning.  That was all when my chronic condition was mostly due to colds and the occasional knee popping out of its socket–things that were regular, but isolated incidents.  I had CFS at the time, but it was more manageable at the time and uncomplicated by an inability to sleep at night.

So, you’re right.  I don’t look sick.  I probably look quite “normal”–I’m either in a workout outfit that’s clean and well cared-for or a work outfit comprised of slacks, a button-down, and jewelry.  I usually have makeup on outside the house when not at the gym or on a hike, and I make sure that my nails don’t get too scruffy and that I bathe regularly no matter how poor I feel.  I don’t eat out, so you see me eating fresh foods I take hours to prepare myself because I have to.  You see me walking on my lunch break and working out in the gym because my back does better with movement, and because the more I walk the less I feel the fire in the joints of my feet.

So on behalf of those who also must go through great lengths to function at a percentage of what you do: listen to us, have compassion, and understand that each person has his or her own battle which is ongoing.  That person who uses a handicap parking pass and walks into the store may be having a good day, but may not be able to walk very far to accomplish small errands.  That friend who has to cancel plans or doesn’t want to go out may be fighting depression or pain.  That coworker who looks fatigued all the time but has no “excuse” because he or she doesn’t have any stressors of note may be fighting a chronic condition.

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