Coping with Chronic Illness

The shame of invisible illness.

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.

Good Patients, Bad Patients, and the Stigma of Chronic Pain

Here are 10 culprits of the Good Patient Syndrome, where otherwise assertive individuals find themselves strangely mute as patients.

1. Pain is often invisible.
2. Pain patients are often stigmatized.
3. The response to pain medication is often misunderstood.
4. Pain patients may have trouble functioning properly.
5. Managed care does not allow adequate time for complex cases.
6. Difficult pain cases are confused with difficult patients.
7. Cultural symbols enforce deference to doctors.
8. Chronically ill patients have disease fatigue.
9. Doctors follow in each other’s footsteps.
10. The devil we know seems better than the devil we don’t.

[10 Culprits of the Good Patient Syndrome]

I think about this often. So far nothing has worked for my pain, at least not enough for me to be willing to endure the side-effects of extreme exhaustion and mental fog (sleep 20+ hours/day, be groggy and unable to think during my waking hours). My neurologist is wonderful and encourages me to take a big role in managing my own pain, but I worry about things beyond her, like insurance companies and the Social Security Administration. To them it might appear I am doing nothing for my pain because I'm not willing to take those medications. To them it might appear I'm a difficult patient, someone who doesn't want to heal. Or maybe I just seem like someone who is making it all up.

Sometimes I do hit that point where I'm "sick and tired of being sick and tired." I don't have the energy, the resources, the spoons to try one more medication and one more treatment. Now, when I get to that point, I take a break. I try things when I'm ready. I'm far more interested in achieving whole body-mind-emotional wellbeing than I am in a quick fix. But, again, does this make me look like a difficult patient to someone who doesn't know me or my history? Is this somehow wrong in the eyes of the mainstream medical profession?

In some ways I've become dependent upon the medical profession and it scares me to think that one bad doctor could make me look like a difficult patient who doesn't deserve care. Thank gods for my wonderful doctors.

[Note: Privilege Check for Dr. Dillard who is quoted in number 10 in the original posting and compares staying with a doctor to women who stay in abusive relationships. Nothing is like an abusive relationship other than an abusive relationship. Also, you're not completely right about why women stay. Yes, my domestic violence advocate slip is showing.]

It's all in your head. And all over your body.

Imagine how hard it would be to suffer with daily pain that can effect your entire body, unrelenting fatigue, headaches, sleep problems, along with depression and anxiety?   Now try to imagine feeling this bad only to have friends, family, and even doctors tell you, "You don't look sick!" or "It's probably all in your head".

[What Fibromyalgia Really Means (And It's Real)]