She's a character, she has opinions.

The shame of invisible illness.

with 3 comments

Earlier this month I had to contact my current semester’s professors and let them know I’m ill. I told them it is almost a guarantee that I will miss many classes. I told them that both my Dean and the Disability Advisor are aware and support me.  I tried to put a positive spin on it, explained to them how I have to prioritize learning the material over sitting in the classroom. But still I feel shame.

Last week I asked fellow students in those classes if I could get notes for days I miss. I made sure to tell them why and that the professors are aware. I even told them that there would be no slacking, that I’ve discussed extra work with the professors to make up for anything I might miss. But still I feel shame.

The other day I bought a duffle bag on wheels to use to cart my laptop and several three-inch thick books across campus. I need to conserve what little energy I have for learning and not waste it on carrying heavy things. But still I feel shame.

I’m applying for Social Security Disability Insurance. I worked all my life, I paid in, now I need some back. I’m ill, I’m disabled, I’m completely unable to even be awake long enough to work. I have medical proof. But still I feel shame.

You know why I feel shame? Because to look at me you’d think I was fine. When I tell you what’s wrong you can choose to believe me or not. I know what I look like from the outside. I know that I look like someone who is healthy enough to attend every class, to have a job, to carry twenty pounds, to walk across campus without stopping to rest. I know when I miss class you think I’m slacking. I know when I say I can’t work you think I’m lazy or I just don’t want to. I know you think I’m sponging off of those of you who can work. I know when I take the elevator, use a wheeled bag, and park as close as I can you think I’m a lazy slacker who needs to get some exercise. And I’m ashamed. I feel ashamed because I can’t do what you think I should do, what I used to be able to do.

Let me say that again: I am ashamed. But you know what? I shouldn’t be. I am ill, I am disabled. I have post-herpetic neuralgia and chronic fatigue immune dysfunction syndrome (among others) and that can be proved medically. I shouldn’t need to justify myself to you, nor should I feel ashamed of being ill and disabled. Next time you encounter someone who doesn’t do what you think they should do, spare just a minute to think about me and how ashamed I am. Then wonder if they have a very good reason for not being able and feel ashamed of yourself for judging.


Written by tldegray

September 17, 2010 at 4:00 pm

3 Responses

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  1. Your posts generally, and this one specifically, make me stronger… you are absolutely not alone in feeling this way, I deal with the same sinking feeling, regularly. I find so much comfort from knowing that there is another young woman out there who is coping and living with post-herpetic neuralgia and getting down but still doing so much awesome stuff – like engaging so actively online and being a one-woman support machine! When I read this I felt… okay… you know what I am not just lazy, I am not just out of shape… I am in so much fucking pain and it really gets me down… and I will be stronger some days than others…and I will reread this when I need to feel better.


    September 17, 2010 at 7:19 pm

  2. And I’m going to read your comment when I need to remember all this and feel better! Thanks, Dana. I’m so glad we (virtually) met.

    Tammy DeGray

    September 17, 2010 at 10:37 pm

  3. Got here from an invisible illness FONSFAQ response at 3W4DW — you left a link to your post in the comments and I’m really glad you did, because this is a lovely and helpful post! It’s always good to know I’m not alone. I graduated from MIT while struggling with severe depression and anxiety, so a lot of the issues you mention here are very familiar to me. I’m nowhere close to conquering my guilt and shame, for one thing, but the more I read about experiences like yours the more I am reassured. Definitely keep reminding yourself that you know your brain, body, and soul the best; you need what you need and you deserve to get it; and other people’s understanding is sloooooowly improving even when it all seems hopeless. Good luck with everything!


    April 29, 2011 at 2:49 am

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