How People with MS Feel About Losing Abilities

Emotions around this part of MS can be difficult to express, but are very real.

I remember some years ago when I was talking to someone about multiple sclerosis (MS) and how it had changed my life. When I mentioned some of the things that had become more challenging to do (basically everything), my friend said, "That must be frustrating to not be able to do the things you could before."

That comment has stayed with me, not because my friend described my feelings so accurately, but because of how very inadequate the word "frustrating" was to describe how I felt about losing some of these abilities.

 

I asked readers with MS to describe their emotions around their declining ability to perform as they once had. Here are some of the responses that I received:

  • I am not sure if the feeling is guilt. I am angry and frustrated that there are so many things I can no longer do. I no longer contribute in the work force and my contribution as wife and partner has diminished as well. I explain this at times to my husband if I am having a particularly bad day and he gets upset with me for being upset. He knows I can no longer do many of the things I used to do and it does not bother him. However, it bothers me!
  • I have been almost depressed the last few days about this. I am a left brain type A person. Not being able to keep up to my own standards makes me feel like a failure. I have 3 children at home, and the oldest is 6. What in the world am I teaching them?
  • I have always been an over-achiever workaholic, and since my MS moved to a progressive form, I can no longer work 12-hour workdays and then go home and find time to make a nice dinner. While it has been hard to deal with, it’s never quite as bad as when I hear my partner say “Sometimes I’m not sure whether you can’t do things or are just to lazy to do so.” I always find myself pointing out that while I probably could do some of those things, but doing so would make me non-functional for the rest of the day, so it would be even less I could do. It’s times like that in which the guilt I normally feel for not being able to help out much around the house or work, turns to resentment against the disease. Admittedly, it isn’t going to go away just because I resent it, but it certainly doesn’t help matters when the guilt that already makes things worse turns to anger at the situation, myself and my partner.
  • Like most of you, I also have a problem with the fatigue and the pain. I tell myself to take it one day at the time, it will all be there tomorrow, no one is perfect all the time, etc. Unfortunately it doesn’t work. I still feel like a failure especially since I have increasing cognitive dysfunction. Some days I just feel like I am stupid, dumb and incapable. I used to be SOOOO on top of things. I raised two kids on my own while I had MS. I was diagnosed 23 years ago. I have been fortunate because some of the relapses have been lighter in the last 10 years, but the fatigue and the ”moron” syndrome have increased along with the pain. If I could I would trade the fatigue and the cognitive dysfunction for the wheelchair any day. But it’s not that easy. The worst part is that for people who are looking at me, is that I look perfectly ”normal,” but a little dumb. I was so proud of being sharp, witty, etc. Sorry about this little comment but I had to vent. No one understands but you guys. My family sometimes thinks that I am getting lazy. Sometimes I even wonder if it’s not true. How can I know if I’m not just looking for excuses? Am I?
  • Being in a highly technical job category and not being able to function as I used to, even 6 years ago, probably hurts the worst. Knowing that I used to be so capable and now feeling increasingly useless affects me the most. My dear wife, who clearly understands the issue better than anyone, can only help so much. We have raised 7 children together. I tried to help my son with geometry last night. It was stuff I’ve done a hundred times yet, I was dumbfounded trying to remember the correct postulates to provide proof for an answer to a question. I tell myself “keep pushing, we’ll get there.” Now if I can just find someone to help me stack firewood…
  • As others have said, I feel guilt for not accomplishing all I set out to do each day. I feel like a failure! But the strongest feelings of guilt stem from the people who do not do things they want to because I cannot join them. Football games (walking to stadiums is out for me), certain venues, shopping, dinners that I have to miss that those in my life miss because they do not want to attend without me, even though I assure them it is fine. Actually I would feel better if they did go without me – I would have LESS GUILT! The extra work everyone around me has to do because I cannot do these things myself also makes me feel bad. Winter is here on the East coast and my neighbors (who are not young) will be out there shoveling my snow because I cannot do it myself. All of these things create huge feelings of guilt for being sick. I hate it, but I guess it comes with the territory.

    Bottom Line: Emotions around all of the things that we have lost and are unable to do because of MS and the various symptoms that we endure can be difficult to pinpoint. By reading how others with MS express themselves, we often find that someone may have said just what we would like to express if we could find the words.

    PS: For those of you who find yourselves occasionally caught wanting to tell other people who do not have MS how you feel in a certain situation, but are unable to express yourself at the necessary moment, I have put together the following article: MS Communication "Cheat Sheets." I hope it helps.

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