December 12, 2010

An Invisible Illness

With the cold weather kicking in, I have been spending a lot of time curled up with good books to keep me company.  This morning, I finished a wonderfully, heart-warming memoir entitled Look Me in the Eye by John Elder Robison.  The book details Robison’s life with Asberger’s and the trials and tribulations he faces as he makes his way through the world.  Towards the end of the book Robison discusses how his disability is received, noting that his condition is often misunderstood due to its invisible nature:

“A person with an obvious disability – for example, someone in a wheelchair – is treated compassionately because his handicapped is obvious.  No one turns to a guy in a wheelchair and says, ‘Quick! Let’s run across the street!’  And when he can’t run across the street, no one says, ‘What’s his problem?’  They offer to help him across the street’ (Elder 2008).

While I do not have Asberger’s, Robison’s comment resonates with me because my illness is not visible to the outside world either.  In some ways, I am grateful for this invisibility as I do not face the judgment and prejudices that many people with physical handicaps are subject too.  I also get to choose who I tell about my disability and don’t have to wear it around. However, the invisibility also presents a lot of room for misunderstanding. I often fear that missing school, having to cancel plans and miss events, and sleeping a lot more that the average might make me appear lazy or unreliable. In addition, many people don’t understand the extent of my illness because it is hard for them to believe that someone could be that sick when they look fine.  Recently, I lost about 15 lbs. due to stomach issues and people often compliment me on how great I look when really it is because I wasn’t digesting my food properly and was in severe pain.  The truth is I’d rather be fatter and feel better!

The other issue with “looking fine” is that it is up to me to ask for help because it is not offered.  I am a proud person and I have a hard time accepting my limitations. I hate feeling dependent on other people and don’t like being taken care of.  While sometimes I’d like to pretend that I am normal and embrace the invisibility, I know that I am better off when I swallow my pride and allow people to help me.  In the past I have ended up making my self sicker by pushing myself too hard when I should have asked for help.

In many of these articles a theme I keep returning to is control. I often feel resentful that I lack control over my symptoms and the limitations they impose on my life.  However, I have to find control in other areas.  When it comes to the invisibility factor of chronic fatigue syndrome and fibromyalgia, I do have control over how I make my invisible illness visible and to what extent.  Writing this blog is a big way that I choose to make my illness visible. In a way this blog is a kind of “coming out” for me that allows me to take ownership of my illness and find the positive in the lessons I have learned from living with my disability.  In the end, it’s all about balance.  I don’t want to hide my illness but I don’t want it to define me either.  By finding outlets like this blog and asking for help once in awhile, I hope to make my illness visible in a way that does not place a burden on others and helps me to be better understood.

Some questions to consider:

How do you tell people about your illness?

How do you cope with your limitations?

How do you ask for help?


  1. Wow, Marah,

    What an excellent post. I very much loved to read it. I do know people with Asperger's Syndrome (someone very, very close to me, actually) and I would love to read the book you just read and will be ordering it from the library.

    I know what it's like to not want to ask for help. For some reason folks with Fibro and CFS like us have trouble asking for help when we need it. We want to be able to do it all on our own. I know for myself, I sometimes think if I asked for all the help I actually need, I'd have a list as long as my body and I'd have nothing left to do. ;-) Funny maybe, but true.

    I am using my blog the same way as you are. A "coming out" of sorts. People know I have some health issues, but they don't really know much about them. It can be frustrating trying to explain yourself over and over again. Can't it? And you're right, when you look fine on the outside, people assume you're doing great on the inside too. I very much liked what you said about when you lost weight due to your stomach issues. Folks assumed you dieted and were trying to drop weight when in fact, you were ill. I'm with you. I'd rather have more weight on me then be thin due to illness.

    It's tough to listen to people tossing advice my way all the time too. I know they mean well. They want me to be okay. But they just don't get it and sometimes, no matter how much I explain, they still just don't get it. It's almost like hitting a wall and hoping to make a little dent.

    I love the questions you wrote at the end of your post and I hope you don't mind, but I'm going to copy them and write a post answering those questions. I think they're excellent and thought provoking. I'll also put in the post a link back to yours. I believe I'll have it up tomorrow sometime.

    Oh, and yes, you may put a link back to my my blog. I'd be happy to have you do that. Thank you so much.

  2. @Susan

    Susan, thanks for making my day! There is nothing I love more than getting feedback like yours. I love when my blog generates dialogue and helps people with our condition connect. I can't wait to read your response.