Right after I was diagnosed, one of the many things I cried was “What am I going to tell people?” My neurologist was quick to answer. “Nothing,” she said. “You’re not going to tell anyone but your closest family and your boyfriend. You’re just going to live your normal life.” The reason, she said, is I wouldn’t believe how much prejudice and misconceptions there are about neurological conditions. I have to admit, to her credit, that before my diagnosis I thought multiple sclerosis was a disease that only happened to people over forty. So, if I had misconceptions, it would be right to assume other people did too.
I ended up telling some of my closest friends as well as my family and my now ex-boyfriend, because the first year after the diagnosis was harder than I expected, and it came to a point where I just didn’t have the energy to make any more excuses. Reactions were very different: some people were great, other people, well-intentioned as they were, wanted to protect me so much I couldn’t help but feel smothered – and guilty because I wasn’t as healthy as they anxiously wanted me to be – and other people were just disappointing in their lack of support, seemingly wanting to distance themselves from “the issue” that was now a part of me.
In her book MS and Your Feelings Allison Shadday says “Keep in mind that although they may struggle to comprehend your illness, many people are simply unable to respond with genuine solace. Their apparent lack of empathy or understanding says more about their own inability to reach out than it does about your illness.” I try to remember this but sometimes I still get sad about those disappointments. And I still wonder how much I’m going to tell when I meet someone new.
Fatigue is the most common symptom in multiple sclerosis, with around 80% of patients reporting it. Out of all these patients, a large percentage of them also report fatigue as being the most disabling symptom. I definitely include myself among them. While I have other symptoms as well, they are not so prevailing or intense as fatigue. My fatigue is chronic. Even when I have a good night sleep, I may wake up feeling tired already. Sometimes I prefer not to shower on a particular day if that means I can spend a few more minutes sleeping. Totally gross, I know, but it’s that bad. Fatigue has also had a huge impact on my social life and on my relationships.
As I’m not one to keep my arms crossed, I searched for books about fatigue in multiple sclerosis. I found a lot of practical and useful advice, mostly regarding work, exercise, the way you keep your house, not asking for help or not knowing your limits, etc. However, I also started thinking about emotions and states of mind, and I found out that many of those can cause fatigue.
So what kind of emotions and states of minds can run you down?
Doctor Gabor Mate also gives a little insight about this subject in his book When The Body Says No. I’ll leave you with an except of a dialogue he had with the mother of one of his patients that absolutely had me stop in my tracks:
“She would always tell me when she was tired of me and she needed to rest because she found me tiring.”
“This is in the last months?”
“Why do you think that is? You can’t be tiring. There’s no such thing as a tiring person.”
“My personality would tire her after a while – it was too intense.”
“When does one get tired?”
“When you’ve been working. So you think it was work for her to be with me.”
“She had to work too hard around you.”