Multiple Sclerosis

Invisible Illness

Having multiple sclerosis used to be a big deal. I am coming up on 6 years since diagnosis and I used to reflect upon it with a lot of sadness. It was very hard to adjust to being “chronically ill.” Sometimes I get frustrated because having MS has limited me in some ways. And sometimes those limitations feel unjust because they are limitations that others put on me.

Like when I wanted to learn to SCUBA dive and my PCP made me put in writing that I understood that diving was dangerous and even more so with MS so that she would agree to sign the medical release for me. Or when I looked into getting a work visa in Australia and learned that they would reject my application based on my diagnosis alone.

Despite the fact that on a day to day basis you would never know I have MS, there is a subtle yet palpable loss of agency that comes part and parcel with this diagnosis. And sometimes that is difficult to reconcile when I feel absolutely fine. In terms of making a baby I have run into this a couple of times. For instance, I will be considered a high risk pregnancy. Though that could amount to nothing more than some extra scans and labs it also means my autonomy during pregnancy and birth is tenuous– it’s easier for hospital staff to override my decisions since I am high risk. A home birth is likely not possible. ¬†It’s hard to accept that when I feel capable and strong.

Today I do not feel nearly as capable and strong. I feel frustrated. Because the combination of letrozole and underlying MS fatigue has me couched. Literally. It’s 11am and I have so many things I want to do. My mind is saying get up and get moving but my body wants more time to gather the energy. This internal struggle is maddening. And it gives way to doubt. Will I be a good parent even on days like these? How will I manage fatigue while I am pregnant if just the meds to get me pregnant have rendered me a useless couch polyp? And furthermore, will I survive the newborn phase or will I spend it in exhausted tears?

I am thankful that most days are not like this. Most days I feel fine, normal. I can pretend I am healthy 95% of the time. It’s just that 5% that smacks me in the face every once in awhile to remind me that MS is real, I am chronically ill and that I do in fact have limitations from it.


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