I didn’t realize how little I actually knew about multiple sclerosis until I started researching after my diagnosis. It isn’t a completely uncommon disease, yet at the time, I was only aware of one other person I personally knew who had it. She was a former coworker. She left the job due to her deteriorating health. She was not a shining example of what I wanted my future with the disease to look like.
She was a pleasant person when we first met. She was about twenty years older than me, yet we had quite a bit in common and became friends. She was open about her MS diagnosis and spoke about it frequently, however, I never would have known without her sharing it. She mostly complained about memory issues and, looking back, she walked a little slower on some days.
First came the cane. She would only use it to get into work from the parking garage that is nearly half a mile away. Then came the disabled parking permit so she could park closer to our building. Then, the cane was needed to walk down the long hallways in our department and eventually would appear every time she would get up. All the while she was also in a steady cognitive decline.
The forgetfulness began to worsen and affect her job. In the beginning, it was hardly noticeable. You would need to remind her of a few things, but we all need a reminder every now and then. But now she was making constant mistakes. Computer clicks she had made a thousand times were becoming foreign to her. The more she declined cognitively and physically, the angrier she became. By the time she transferred to a less demanding job, we were barley speaking. I regret that now, especially since I have a better understanding of what she was going through.
Looking back, I can see the emotional toll MS was having on her. She was pulling away from her coworkers and drawing into herself. She was becoming more isolated and less talkative. Things she was once open about she no longer wanted to discuss. I am sure she felt lonely even though she was surrounded by tons of people who cared.
Emotions are hard to talk about. It is not something I have particularly excelled at, even more so since my diagnosis. This post will actually be the first most of my friends have heard about my loneliness. Actually, it would be the first any of my friends are hearing about it. I think, for me at least, I do not want people to see me having a difficult time. That was one of my first struggles. I was self-conscious in my walking aids. I would wear pants even in the warmer weather to hide them. I do not like wearing my AFO with dresses or capris even still, but that has more to do with it just not being pretty.
I eventually started feeling more comfortable letting others see that I did indeed need help walking. I am still very self-conscious when I run into people I haven’t seen in a while. Have they heard about my diagnosis? Are they going to ask about my walking aids, or pretend they don’t see them? It can be awkward for both of us.
As hard as it is to let people see my physical disabilities, it is even harder to let them see the other side. The mental and emotional struggles of MS are unfathomable. All of my physical disabilities have directly led to the development of phycological disabilities, mostly in the form of depression and anxiety disorders.
As I have spoken about before, anxiety can lead to avoidance behavior. Avoidance leads to isolation and loneliness. According to mssociety.org, three out of five people with MS experience loneliness and social isolation.
MS is a very isolating disease. Your symptoms are unique to you. No one else, even others with MS, experience the disease the same as you. It is unpredictable, a challenge to live with, and hard to understand.
I find it impossible to put into words what MS feels like. I have tried countless times. I have even given visual demonstrations. No one but me will ever know what it feels like for me. I cannot make others understand what it is like for me to not be able to lift my leg. I can’t find the right words. I want my loved ones to know what I am going through, but I can’t help them to understand. When you can’t find words, you start to keep quiet and feel alone with it.
You also fear people will think you are being extravagant with your symptoms. If I did not experience some of the things myself, I would not believe them possible. I never dreamed it would be impossible to grip a pen tight enough to push it against paper to write. I never dreamed my foot could feel like it is sliding out from underneath me when it touches the ground. I never dreamed it would be possible to expend all of my energy for the day simply getting dressed some mornings. These are things I don’t talk about for fear of not being believed.
There are other ways MS cuts us off from others. As much as it scares me and freaks me out, I understand it probably does the same to the people close to me who watch my struggles. They do not always understand what I can and can not do. They do not always understand good days and bad days. Bad days mean saying no to hanging out or canceling previously made plans. You can only tell people “no” so many times before they stop asking.
There may also be a breakdown of friendships when we can no longer do the activities together we used to do. My social hobby was cycling. I struggle to ride now. My entire circle of friends seemed to revolve around bikes. Since my diagnosis, there are people I used to see on a regular basis that I have not even talked to in over a year. It is not their fault, nor mine. Circumstances have simply changed.
It has taken time to get where I am in accepting what is happening to me. I still have great strides to go. This post is my first baby step in talking about my feelings. I know I have people in my life who care deeply about me and want to help. I am fortunate in that. I hope to get to where I don’t have to write how I am feeling and can talk to them about it directly one day.
(M)y (S)tory 