One of the most frustrating things about living with multiple sclerosis is that most symptoms are invisible and we appear to be well to other people. One day the entire world seems blurred – yet you’ll never know how I am seeing you. The other day I am so tired I can barely stand or listen to people talk – yet you’ll just say I’m not getting enough sleep. And how about those days when my memory took some time off and I can’t remember anything you told me? – you’ll just say I wasn’t paying enough attention, or worse, that I’m a bit dumb. And let’s not talk about those days when my balance is off and I bump into every other object in the room – then I’m just a clumsy little girl.
I feel ashamed of talking about my little handicaps because people will most likely eye me suspiciously and assume that I’m just trying to get away with responsibilities or work. I had a boyfriend who once suggested I was faking symptoms just to get attention and on another occasion he suggested I was using the disease as an excuse to get what I wanted. This kind of response makes ms patients feel isolated, insecure, misunderstood – and that’s hardly breaking news. If you research a little about multiple sclerosis, either online or the old-fashioned ways, you’ll find lots of people wrote about it.
For instance, Sandra Amor and Hans Van Noort wrote in their Multiple Sclerosis – The Facts that “symptoms may range from being almost unnoticeable to severe, and anything in between. In fact, quite a few people with MS do not show any clear signs of their condition at all to untrained eyes. Paradoxically, this in itself can be a cause of problems too. Family members and colleagues may sometimes think that complaints may be exaggerated, or even imaginary. Society can sometimes be quite impatient with people who need special attention but still appear to be largely okay from the outside, especially when they are young.” Allison Shadday adds in her MS and Your Feelings, “Unfortunately, society reinforces a stoic stance. We’re taught that it is better to keep our ‘complaints’ to ourselves. But the price we pay is isolation. Keeping up a good front inevitably makes us feel distant and misunderstood by others, rather than accepted and loved, as we so desire.”
But the truth is, most people don’t care enough to read or research. So when I found out about the Seeing MS project, I thought it was fantastic. The idea is to expose the invisible symptoms, by depicting them in an image. Nine photographers were invited to participate, and anyone else can submit their pictures as well. Where words fail, maybe images can help.
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.
If you’re looking for a self-help book about multiple sclerosis, Allison Shadday’s MS and Your Feelings was to me the most helpful out of all I’ve read. Allison Shadday worked as medical social worker, and she worked with a lot of ms patients when she was diagnosed with ms herself. Because she found it hard to find counseling after her diagnosis, she decided to specialize in counseling for people with chronic illnesses, in the hope that she could give these people more support.
MS and Your Feelings is very useful and complete. It provides a lot of information about the disease, but mostly a lot of information about dealing with the emotional turmoil that comes with it and finding positive solutions to physical, cognitive and emotional challenges.
I personally found very useful the section about us trying to shield from intense feelings or emotions because we fear those experiences may trigger an attack. However “climbing into a shell and hiding from life won’t insulate you from illness” either, so she suggests ways to manage it all. Her suggestions are realistic, down-to-earth, not patronizing at all, and varied, because what works for someone may not work for someone else. I still use some of the techniques to alleviate stress she mentions and I compiled some of her advice in a file that walks around with me on my smartphone and that I check as a reminder whenever I feel insecure, stressed out or I’m just being mean to myself.
Shadday writes both from a professional and a personal perspective, which gives the book a sense of being close to you and trustworthy. She tells stories about herself, often with a sense of humor, that highlight many aspects being analyzed. If you have thirty minutes, this interview with her also gives a glimpse of many things you will find in the book.