The Cruelties of Chronic (often invisible) Illnesses

Sometimes called “conditions”

One of the hardest things about having MS (multiple sclerosis) is that as you deal with strange and sometimes terrifying symptoms, friends kind of drop out of your life. I’m not sure if it’s because they really don’t want to hear about what you’re going through, even as you may look completely “normal,” or if we talk about it too much for your comfort. Then there are the times when the symptoms are definitely not visible and are devastating to the pwMS (person with ms). I’m talking about attacks (better known in the world of MS as exacerbations). An exacerbation is when the pwMS begins to experience brand new symptoms that can be quite disabling, or symptoms experienced previously but in a much deeper, intense way, sometimes with other new symptoms. These have to continue for at least 36 hours to be officially considered an exacerbation. While officially diagnosed at the age of 30, in retrospect, I’d had my first symptoms at the age of 19. Second exacerbation at the age of 21. Neither experience was severe enough or lasted long enough for me to even consult a doctor. I blew them off as just weird shit your body sometimes does. Third time happened probably 8-10 weeks after I had my first baby. A friend invited me to go with her to an aerobics class. I remember feeling very awkward, as though I’d lost all coordination. I blamed it on being out of shape, plus I wasn’t ever a big class kind of athlete, and preferred working out on my own. I got a rowing machine and would do that while my sweet baby napped. Later, after I had our second baby, I went to a gym that offered something I really liked. It started with jumping on a mini trampoline, followed by a weight lifting exercise. I don’t recall the exact order of the exercises, but sometimes it would be a stationary bicycle, leg weights, arm weights, and so on. It would tire me out but in that good way. I would gather up my babies and head home for lunch and naps (although that baby #1 rarely slept or even stayed in bed). She liked to get her Fisher Price cassette player/recorder and wander around, singing. Luckily, she rarely woke up her little sister. A couple of years into my gym routine, I decided to do something different and once again tried an aerobics class. It was very much like the one I had done as a brand new mom. I felt uncoordinated and as if something was terribly wrong with my body. Since I generally disliked that kind of workout, I just never did it again. I used to take my girls for walks in our wagon, which they loved. We’d stop and identify the birds we heard, observe the shenanigans of the squirrels, identify fallen leaves.

Then in the summer of 1990, my husband was suddenly called into deployment. I was on the board of my kids’ Montessori school and sitting in a meeting. We had no phone service because we were in the process of moving to a new building, so he came in person. I’ve never forgotten his words, as he stood there in full combat gear: “You have to come home because I have to leave.” I went home where a neighbor was watching my kids.

While my husband was in Iraq, I had a whole host of new symptoms. Weird sensorial sensations. For example, I felt an itch on my left elbow; when I scratched it, it felt completely numb. One night after the kids were asleep in their beds, I looked down with my chin touching my chest, which elicited a bizarre sensation of electricity running down my spine.

There were plenty more similar and worse events over the next few months. I did finally see a doctor who flat out said he believed I had multiple sclerosis.

A lot has happened since that day. Husband resigned from the Army and we moved to my home state where hubs got a job as an engineer. What I began to notice was a complete lack of communication from people I’d considered dear friends. Yes, they went through changes too. But no phone calls, no Christmas cards, nothing. Meanwhile, I experienced some brutal attacks that I wasn’t sure I’d ever recover from. Fortunately, I did mostly recover. I was able to work and continue to raise our beautiful girls with my husband. But friends, old and new, rarely, if ever, asked about my illness, mostly invisible at this point.

I’m not sure why so little interest was ever expressed. Was it because most of the time I looked okay? Was it because people were a little afraid to ask? Was it because they believed nothing was wrong? So much of what happens in MS is completely invisible. Depression. Sensory feelings. Lack of abilities that once were exhibited just like others (wearing of heels, even low ones.) Always looking for a place to sit because of fatigue. Inability to withstand hot summer weather, known to worsen symptoms.

Nearly all people with MS will start as RRMS (relapsing remitting) And go on to transition to SPMS (secondary progressive). Others are initially diagnosed as PPMS (primary progressive). As more DMT (disease modifying treatments) are developed, the hope is that fewer people will progress to secondary progressive MS. But for now, there are a whole bunch of us who have moved to secondary progressive forms of the disease, not to mention those who started out with primary progressive disease. Basically, it means that it just keeps getting worse. And worse.

If you know anyone with MS, maybe check in on them occasionally. When you do, please remember that depression is actually a SYMPTOM caused by the disease and not self pity or separate from the illness. The illness causes the terrible depression just as it causes weakness and lack of coordination that prevents walking and running and the ability to lift things. I guarantee that your time will be appreciated and remembered.

CULT-because pwMS are in an involuntary cult with no exit

JAM-because we have so much experience with this damned cult and its cruelty