How I Accepted and Came to Terms With Multiple Sclerosis
Every week I participate in a Twitter chat about Multiple Sclerosis (MS) called #ChatMS. I don’t represent them or anything but I think it is a good platform for connecting people who have MS with each other so that they can share their experiences and opinions on various topics with one another. Each week there is a new topic and often these topics get me really thinking about things I never really put much thought into or get me thinking about topics I have visited before but in new ways, from new perspectives, or new angles. I am sure there are different Twitter chats out there, but this is the one I have been participating in so if you are on Twitter and want to check it out just search for the hashtag “#ChatMS”.
Discussions are every Monday from 7:00pm (EST) till about 8:00pm (EST). Again, I am not representing them in any way shape or form, I just think it is an excellent resource for people with MS who are looking to connect with others or simply need a platform to speak their mind and I wish this is something I had access to when I was newly diagnosed with MS. Anyway, enough about that, I basically just spent a whole paragraph advertising for this community, so let’s refocus. The last topic was about accepting MS/the diagnosis of MS.
This made me look back on my life with MS in a slightly different light. “They say there are 5 steps to accepting an illness: denial, anger, fear, depression, and acceptance.” Was I in denial when I received the diagnosis of MS? No, I wasn’t, I never was. I have always been very fact-oriented and the fact of the matter was, my MRI suggested MS and my lumbar puncture (LP) confirmed it, plus all my presenting symptoms also suggested MS, so with all of that there was no doubt in my mind that I had MS.
Jumping into anger
So I pretty much jumped straight into anger: “Why me? What did I do? This isn’t fair!” but I eventually realized that LIFE is not fair and that there was no reason for this, there doesn’t always have to be a reason for things in life despite how much we may want there to be one, sometimes stuff just happens, “luck of the draw”, I was dealt a crappy hand so I could either sit and cry about it or get up and figure out how to use that “hand” to win this “game” we call life because, “I am going to win, I always win.”
Suffering from depression
But despite my determination there were still setbacks, many setbacks. Since I was a teen I have dealt with severe depression, debilitating depression. Maybe this was a precursor to my MS? Like whatever caused my MS just so happened to wire my brain in such a way that I had a predisposition to developing depression? Who knows, doesn’t matter, I have what I have, it is what it is. So for years I battled this; sometimes I would wake up depressed for no apparent reason and sometimes I would become depressed over my situation with MS which was always managing to keep me from fully living life like all the people I had grown up with. I couldn’t always keep up and that would either anger me or depress me or sometimes both.
Developing certain fears
There were many times that I had felt that I had control of my life and I (at the time) interpreted this as acceptance. “This is how I walk now and I am ok with that. I can’t do this anymore and I am ok with that. This is how I feel now and I am OK with that”. But after a while I would always wind up angry and depressed again. What I didn’t realize was I had developed certain fears; what does the future hold for me? Who am I now and who will I be later? What career paths are an option for me? How am I to keep up with the pace of life when I have no idea how I will feel when I wake up tomorrow? How will I balance a social life? What if my MS never stabilizes and things just keep getting progressively worse? My mind was flooded with so many unanswered questions and I hated that, I hate the feeling of loose ends but I just could not tie them up and so, this overwhelmed me to the point that I was constantly slipping back into a heavy depression.
Seeking help from a therapist
Eventually, I hit a breaking point with my depression and I sought help from a therapist. I had always hated the idea of therapy, the idea of not being able to solve a problem on my own and having to ask someone else to help me. But finally, I admitted to myself that I just could not solve the puzzle of my life on my own. I needed the help of a new perspective, I needed someone whose face was not as close to the problem as mine was. I think of it like this; if you hold a penny up right in front of your eye you can hide a giant mountain behind it. So, what was it that everything I was so close to was hiding from me? For that I would need the perspective of someone else who was not so close to my problems.
Thinking about problems differently
To my surprise this really did help me put everything in perspective as well as help me start thinking about problems differently. Since then I have not randomly woken up feeling depressed nor has any situation left me feeling hopelessly depressed. I understand now that yeah, I had already come to terms with the many “new normals” in my life with MS but I still had not come to terms with the disease itself, specifically, the unknowns of the nature of the disease.
Accepting the unknowns
Now I have accepted that there will always be problems in my life (brought to me by MS) that I just can’t seem to find the solutions to and that is OK because the solutions will always find me so long as I am living a life that does not hide me from them which ironically involves not living in fear in the first place. When human beings encounter danger they naturally want to do one of three things; Fight, flight, or freeze. The same can be said about fear: people will either try to fight and overcome it, run and hide from it, or simply not do anything in hopes that life will eventually change on its own in such a way that everything just magically gets better. Well, I am done running from it and I am not staying in one place hoping that life will change in such a way that all my problems are solved.
“Time changes everything. That’s what people say, it’s not true. DOING things changes things. NOT doing things leaves things exactly as they are” –Dr. House (From the TV show House M.D.)
Coming to terms with MS
You can argue whether that is true or not (I know I can argue both sides) but that quote has stuck with me, in fact, I have it pinned up on my wall above my computer right now because I find it motivating; the best way I can stop running from the problems I can’t currently solve, the problems that cause me to lose all hope and motivation causing me to want to just not do anything, and instead fight for the future and life that I want? Is to get up and do something, anything, anything other than lie in bed depressed and fearing all the unknowns of my life with MS. So for me? I had quickly “accepted” that I had MS and that it was affecting what I thought was normal but that was different than what this is, this is what “coming to terms” is (in my own opinion). You see, now I am finally ok with these many unknowns and though taking any sort of action in life without having all the answers is scary, I am certain that so long as I am moving forward in some way that I will eventually find a solution.
I don’t like my situation with MS, it is still very much a daily battle for me that I wish I did not have to take part in, a battle that at times I am still unsure how I can possibly win, but I have come to terms with this reality because even though I don’t know how? I know that I will be victorious.
“In the end everything will be OK, if it’s not OK? It’s not the end” –Original Source Unknown
Does your employer provide workplace accommodations due to your MS?