The Invisible Illness

     Fibromyalgia is an invisible illness.  I look normal on the outside so most people don't even know I have it.  This is both a blessing and a challenge.  It is a blessing because I can be me and not have everyone focusing on my illness.  It's also a blessing because I am vain enough to want to look "okay" when people see me.
     It is a challenge because I look normal so people expect me to be able to do everything a healthy person can do.  They don't understand that taking on a few extra things at work will make me spend the weekend in bed recuperating or that going to work today was all I could physically manage and I can't go out after work for the "fun" stuff.  The only thing they see is that sometimes I look "tired."
     It is also a challenge for me because I am a perfectionist, an over-achiever, and a people-pleaser.  I do not want people to think that I use my illness to get out of doing work, so I work extra hard to make sure no one will feel that way, even if that makes me have a flare up.
     Sometimes people react funny when they find out I have Fibromyalgia.  Some people think it is a fake illness and I am just trying to get attention - one doctor even put that in my medical file for me.  That made me feel awesome!  Others think it is a mental illness and that it's all in my head.  Some people know a little bit about it and think they know what it is, so they say things like, "Oh, so you get tired? I get tired too," and then the conversation revolves back around them.  Other people know exactly how to "fix" me and offer all kinds of free medical advice.  All of it is funny on my good days and makes me feel worse on my bad days.
     It's hard living with an invisible illness.

Invisible Disease

     It is amazing how much of our identity comes from what we accomplish and what we "do," not who we "are."  The first thing people ask when we meet is, "What do you do?"  The perception is that our job is who we are.  This is very frustrating for people who are out of work or on disability.  It makes us feel like our identity has been lost.  We are no longer doers, even though we still have value as people.
     Fibromyalgia and chronic fatigue are invisible diseases.  You can't tell from looking at us that we are sick.  When we look fine, people tend to think we must be fine, even when we are not.  This leads to the idea that we are lazy, even though many studies show that our drive to perform and "do" may have contributed to our disease.  Some people, including doctors, look at our healthy appearance and call us liars.  I would not have spent thousands of dollars searching for an end to this pain if I was a liar.  I wouldn't have contemplated suicide as a way to stop the agony because I wanted you to believe I was telling the truth.
     Many of us are forced to drop out of school or go on disability because of the pain and fatigue.  This is heartbreaking because we feel like failures.  We are no longer doers, so we are nothing in your eyes.  We have failed you and ourselves.  We mourn the loss of our identity.  Strong emotions cause physical pain for us and this makes life even more unbearable for us and for you.  Statistically, 75% of people with chronic illnesses get divorced.  We also have a higher rate of suicide.  Why would we lie to get this kind of attention? 
     Many, like me, are able to work long hours at their jobs.  However, that is all we are able to do.  As the week progresses, I find myself getting weaker and the brain fog closing in.  By Thursday and Friday, I am lost in a fog of pain and fatigue.  It feels like I am asleep and have no idea what is going on around me.  I crash every weekend.  I crawl up in bed and sleep for hours on end.  I wake long enough to eat or do the few things I have to do and then crawl back in bed.  This is the only way I can manage to keep working each week.  I have to give up everything I enjoy, including socializing with family and friends because I don't know if that will be what makes me crash for three days.  I may not look sick, but this isn't the way I would choose to spend my life.
     Invisible diseases are no less real than visible ones and who we are is as important as what we do.