On Suffering and Multiple Sclerosis

Tips to Help Endure the Rough Times

Most of us living with multiple sclerosis (MS) feel pretty bad at least some of the time. Many of us would actually say that we spend large portions of our days feeling downright horrible. For some of us, our “good days” would still inspire non-MSers to call in sick to work and lay in bed.

Yet, we bristle when we hear someone referred to as an “MS sufferer” in the media. When acquaintances ask us how we are doing, we say, “oh, fine,” unless we are having some new acute flare-up of a symptom that bears mentioning (usually because it is noticeable).

Speaking for myself, when other people mention my MS, I chirp my way past any insinuation that my life might be hard, then I rage inside because no one understands just how hard it really is. This certainly doesn’t make the situation any better – instead it introduces or worsens feelings of loneliness and isolation from those who love us.

So what is the solution? What do we do when we feel bad, but don’t want pity? When we want to feel better, but know that might not happen (at least physically) in the immediate future?

I wish I had the answer. I don’t. However, I do have a couple of suggestions on how to get past some of the worst parts, based on things I do (or don’t do) myself:

Never Compare:

Yes, it is true that there are many, many people who do not have to deal with MS, who are seeming to get off “scot-free,” while we have to strategically plan how to get enough rest to function throughout the day or worry that each twinge could mean that we are on our way to more discomfort and disability.

It is also very true that there are many people worse off than we are at any point in time, due to health or other reasons.

In my opinion, comparing ourselves to people on either side of us on the “suffering spectrum” is not productive. Regardless of which way I am going with it, I get myself into a fix.

Whether I am “poor me, it’s not fair,” comparing myself with someone healthier gets me into a “why not them?” place that I don’t like. Conversely, going in the “at least I’m not that bad off” direction does nothing to make me feel better and actually brings up questions of how “suffering” is doled out in a cosmic way – questions that I am unequipped to deal with at all, but especially if I am in a funk about my own condition.

The world is a harsh place. Without a doubt, some people get more of a taste than others of this harshness, much of it beyond anyone’s control. I have found that the only way to make sense of any of it is to do what I can to alleviate suffering (my own or others’) through small gestures or temporary “remedies” or even loud screams. Focusing on the “why,” especially the “why me?” or “why not me?” has never done anything for anyone, I am pretty sure of that.

Embrace the Tiny Good Things:

What is your favorite Jelly Belly flavor? What was your imaginary friend’s name when you were little?

What is your favorite quote? If you could order any dessert right now, what would it be? What is the funniest dog name you have ever heard?

Okay, I’ll admit it – I would be fairly annoyed if I was reading this and I thought the author was telling me that life is a wonderful, candy-filled dream, just waiting to be grabbed. That is not what I am saying at all – much of life is a gray place, but there are shiny specks in any existence. Make a point of hunting for them at times and you might be surprised at what you find.

Try going as far as coming up with a favorite memory or mental picture to call upon in your dark hours. For me, I have a “photo” in my head of my twins’ toes when they were six months old – 20 of them, pink and perfect. This memory has gotten me through infusions, injections, MS hugs and MRIs, and made those things a little more pleasant and a little easier to endure. Give it a try.

Go Ahead and Get Mad or Sad (or Whatever). Just Make Sure that You Stop at Some Point:

Those of us with MS (and our families and loved ones) have been dealt a blow (a big, lifelong, chronic blow, to be accurate) with our MS diagnoses. There is no doubt about that. No one should be expected to absorb a situation that changes our lives, our futures, our dreams, and not be bitter about it at times. To expect people with MS and those close to us to not feel negative emotions about all of the MS crap that we have to endure is unrealistic. These sorts of expectations also set us up to fail at living a full life with this disease, as we need to dig deep and grapple with our emotions in order to live with them productively, rather than ignoring them.

I have been told by some readers that they have not felt “empowered” by my take on my disease. These people were disturbed that I wrote that a loss of some function made me feel sad or that a certain procedure hurt. They wanted to hear that it will all be okay, I guess.

However, I have been told by many more people that it helped to know that they were not alone in their negative emotions. They were helped by knowing that it was okay not to be brave all of the time, to cry when it hurts, to scream when it might help ease some stress.

In this, I try to take a lesson from small children. They wail, mouths open, when it hurts, they tremble when they are afraid, they fling themselves to the ground when they are enraged. Then they get that out of their system (or at least to a manageable point) and they go back to what they were doing. I’m not saying that we have to be as demonstrative as toddlers, as most of us have lost the cuteness and social cache to get away with it. And, clearly, we have many more obligations to meet and roles to fill to give into our every emotional “whim.”

Still, there is something to be learned in watching a little person “let it all out,” then “let it go” that I think we could all get something from.

IMPORTANT NOTE: There is a difference in feeling sad for a short time period and depression. Depression is a very real symptom of MS. If you have MS and feel very sad or have no interest in things around you, you need to seek help. It is not your fault, but you MUST get help. Read the full article: Depression and Multiple Sclerosis Overview

Find “Grace” in Feeling Like Crap:

When I am feeling particularly bad, it is difficult not to let my mind race forward an hour, a month, a year, ten years and wonder, “will I still be feeling like this? Will I feel worse?” It is also hard to not start searching for a reason for feeling bad: Is it a relapse? Am I progressing? Is my treatment no longer working? Should I have stopped/started/changed that medication?

What am I doing wrong? Then I might start trying things: I take a nap, I exercise, I drink more water, I skip the evening glass of wine or I have an extra glass of wine…

Sometimes some of my measures help, sometimes they don’t. What I have found helpful, at least some of the time, is to calm down and not do anything. When I am feeling my worst, I try to just be still. That’s all – be still – physically, mentally, emotionally. It is very, very hard. However, giving myself a mini-vacation from “what should I be doing about this” mental chatter seems to give my brain a chance to figure out some of it for itself. Often this leads to feeling a little bit better, or at least a little more rational about my current state.

Have Your “Go To” People:

A good friend of mine has her own list of diagnoses that she lives with. Sometimes all we have to do is glance at each other or answer the phone with a groan, and we know exactly how each other is feeling.

Having a friend like this helps when days are bad and helps when days are good. We never have to explain to each other that when we are feeling “fine” it really means “kind of functional.” We can laugh together at absurd comments made by others, instead of biting their heads off for being insensitive.

We can wonder what life is going to bring us later that evening, in a year, when our kids go to college. We can say what we are really feeling (physically and emotionally) in a safe place, which gives us the strength to leave those feelings in that place and go make dinner for our families or help with homework.

Find yourself at least one person like this. I recommend it not be someone in your family, as occasionally you need to be able to explain why you are feeling overwhelmed or angry without prefacing it with phrases like “it’s not your fault” or “you know that I love you, but” in order to help that person not feel threatened or guilty.

Bottom Line: Yes, as people with MS, we suffer. We do. Our job is to find our way in life to deal with the suffering with dignity – learn from it what we can, don’t fear it any more than we have to, and deal with it as we need to in the moment, whether that be fighting it fiercely or giving into it for just a little while. Our goal is to not lose ourselves in the process.

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