September 10th-16th, 2012, is Invisible Illness Awareness Week. I thought about writing on some of the various topics floating around in the blogosphere this week. But I decided that there is really only one thing that I would like to say about the topic of invisible illness, as this week comes to a close. It is something that I think we can all take something away from. It is simply:
Try not to assume that someone else has it better than you do.
Everyone has struggles and none of us know what the other person struggles with. Even the person in your life that appears healthier than anyone else you know, might have struggles that you (or nobody else) know about.
I also think it’s important for those of us who are coping with chronic illness to acknowledge that there are two sides to this issue. Speaking as someone who has dealt with both visible, and non-visible health issues, I can tell you from personal experience that both come with positives and negatives.
With non-visible illness:
I dealt with a lot of people who didn’t believe me. That was hard. Some of those individuals were in the medical field, that was particularly insulting as they should have known better.
But I also had the opportunity on good days to go out in public and have nobody know that something was wrong with me. I could sit in a crowd and look like everyone else. I could walk around a store and look like everyone else. I could go about my business without anyone worrying about me or treating me differently, even if it was for short periods of time.
With visible illness:
Individuals in the medical field (for the most part) don’t treat me like I am healthy and lying anymore. That is a huge bonus. For example when my diagnosis was fibromyalgia and I told someone that I was too weak to do xyz, they might be so stupid as to lecture me on how I needed to exercise. Now that I have MG that has progressed to the point where I have lost a large percentage of the muscles in my legs and one leg is decidedly more withered than the other, people tend to believe me when I say it is hard for me to walk.
The truth is, I was struggling all along, but when people can see it with their eyes, they tend to believe it more. That’s the upside.
The downside of visible illness, is that I’ve totally lost my anonymity. I can no longer pull off being “like everyone else” for short periods of time. As much as I appreciate a better understanding from those in the medical community, I still want to be treated as normally as possible.
I miss being able to walk around Target and go shopping for a little bit and not have people look at me with concern in their eyes.
I miss having a body that I recognized.
I miss being able to speak with a friend or family member on the phone and them not be able to hear the struggle in my voice to continue talking, because of weakness in my muscles.
So while (rightfully so) there has been a lot of focus on the hardships of non-visible illness this week, mainly due to a lack of understanding from others, let us remember that both sides of the coin carry their own burdens and their own silver linings.
I wish health and happiness to all of you, no matter which side of the coin you are on.