Invisible

People call illnesses such as CFS, auto-immune diseases, fibromyalgia, chronic pain, and arthritis “invisible illnesses”.  These are diseases and chronic conditions which aren’t outwardly visible to your average bystander.

Say that you break your arm or leg.  You may get a handicap placard, a cast, or a cane to help with your mobility while you recover.  Or if you have a chronic condition requiring a walker or wheelchair people obviously can see that signal of your injury or impairment.  Not so with invisible illnesses.  If someone with an invisible illness requires a placard, there are chances that someone somewhere along the way will comment on it.  “You’re not handicapped!  You’re walking just fine!”  But sufferers of invisible illnesses are not fine, and perhaps need that placard because walking farther than a few feet on bad days is simply too much.  Just because others may not see it doesn’t mean that it’s any less of an issue for a person coping with these illnesses and disorders.

People assume that because we appear normal–we get dressed and put on make-up, drive our cars, often go to jobs, and do our grocery shopping–we are.  Unfortunately, that’s not the case.  All these outings require careful planning and coordination, and often we do our best to look like any other person on the street.  I learned in college that the best way to blend in was to wear make-up.  “You look exhausted!” a good friend would tell me on a regular basis.  (Probably that was because I was, and my staying up to finish all my homework to my perfectionist standards didn’t help my haggard appearance.)  When I went off to graduate school we only had each module (course) once a week.  Thankfully, two of those were on the same day, which meant there were only three days of the week I had to look put together in a professional setting.  The rest of the time, I hid in oversized sweatpants and sweaters, slept as much as my body would allow, and stuck my nose in a book.  I met for study groups, but I did my best to not let anyone see how I truly was feeling.  I wanted to leave all that far away in America and focus on my academics in England, and I wanted to try to leave behind all the social and physical stressors I’d felt in college.  So, in order to put on a brave face (literally) I wore dresses and tights with a full face of make-up three days a week.  I stopped going to served dinners, as going up and down the hill to college meals was just too much for me to handle most days, and that would have required the effort to get properly dressed and put on all that make-up.

I believe that the physical symptoms are not the only invisible things for sufferers of these chronic conditions.  We, ourselves, are so wrapped up in our pain and fatigue that even on good days we feel unbelievably alone and invisible.  Friends you had in college are suddenly no longer speaking, even if they’re only a few miles away.  They can’t come hang out for a few minutes from down the hall if you’re having a bad day, and so they vanish.  You can’t make social gatherings, and people seem to forget you exist.

When I hurt my back in England it came shortly after I’d helped out a couple of friends who had just had a baby.  Between the two of them, neither could muster the energy to walk the short distance to check in.  A friend at whose house I’d stayed when she was horridly ill never came to see if I needed anything.  People I’d spend hours with in our workroom defriended me on Facebook and stopped texting me back.  Because I was no longer a constant presence, and perhaps because I was no longer “useful,” I was completely invisible and seemingly forgotten.

(I will, however, say that not everyone vanished.  My boyfriend and now husband made adjustments to his work schedule in London to help me.  There are many reasons I married this guy, but his loyalty is near the very top of that list.)

I encourage you to check in with those who may suffer from chronic conditions.  I know I hate asking for help.  I was the “house mother” in my housing block at graduate school because I was always available for a chat and even provided a cup of tea to anyone who needed a lift.  I’m the one who would prefer to take care of others, and I hate to trouble anyone by asking for anything.  I would also urge you not to compare their illness or condition with being a parent or a college student or anyone else who may not get the adequate amount of sleep–yes, sufferers of chronic illnesses are legitimately tired, but the fatigue we feel down to our bones is unlike being tired.  We can’t ever sleep off the fatigue, and we never feel rested in our muscles, joints, or brains.  The best things you can do are be there, show you care and are compassionate, and take their minds off the fatigue or pain.  Friendship and love are truly the best medicines when nothing else helps.

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