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?
