“Two Sides of the Same Coin”

March 5, 2012

Both sides are living with it. Both sides have a different perspective of it. For a non-MSer (family, friend…) it is very difficult if not impossible to understand MS in the same way as the MSer because they walk in separate shoes. This is an extremely frustrating dilemma.

People who have MS need help and support; family and friends want to give help and support. How do you build a bridge to bring two towns across the river from each other together?

Communication and education.

In the beginning when a diagnosis is made, most people want to read about MS and learn what it’s all about: What is the cause? The symptoms? The treatments? The prognosis? That’s a normal and a good start, and a necessary one, for all involved. Sometimes a spouse, close friend or family member doesn’t do that or want to do that; then it is up to the person with the MS to find the ones that do, including reaching out to MS peers. Without people support, an MSer won’t survive their illness well.

During the initial education process, the understanding of MS begins to differientiate between both sides. The MSer is experiencing the fatigue, the numbness and so many other symptoms, but obviously the non-MSer is not. This is where the communication can start. The MSer can strap a ten-lb. weight around her husband’s ankle and tell him that’s what it feels like to walk with that leg. Or, she can have him put on a mitten and try to find things in her purse like coins or tissues if she has a very numb hand.

But the non-MSer will encounter two problems. First, how can they help a numb hand or a heavy leg? And second, many symptoms are invisible and it’s easy to forget that these symptoms exist. The MSer “looks so good”, or normal.

It is at this point that education needs to be tied to communication. The MSer needs to speak up in a nice way something like “My legs feel so stiff and heavy, I have to sit down and rest. When you have time, could you…” From the other perspective, the non-MSer can casually remark “You look like you are tired and struggling to walk. Do you want some help?” Or, “when I was reading the book you gave me, there was a suggestion to….do you want to try it?”

My husband will always help me, but I need to ask/tell him what I want or need and get beyond the feeling of “why do I always have to ask?” It is his nature to get frustrated easily and I find myself having to calm him down and direct him as to what to do. For example, if I slip and fall during a transfer from my wheelchair and yell to him for help, he will respond in a frustrated way: “What do you want me to do?—tell me what to do, tell me how to help you without hurting you.” I try to stay calm, tell him to calm down, then tell him what to do.

We MSers need to be educators, and open our mouths in a respectable way (when possible!). In addition, others around us will take their cues from us. If we are comfortable, they are comfortable. We set the tone. But many times we are cranky because we are so fatigued and don’t feel well, so our actions become mean toward our loved ones. They will have to develop a thick skin and remind themselves frequently not to take these mean attacks personally. Quite a huge task to say the least.

During an RV trip to Yellowstone one year, after a very long day of sightseeing and getting in and out of the RV I was exhausted. We came to the famous waterfalls, and my husband kept insisting that I have to get out and see them because I’ll never get the opportunity again. I kept saying I didn’t care if the sky was falling, I was too tired to move and I would look at his pictures later. He kept pushing until I finally exploded and screamed horrible things. We both felt guilty later; he felt bad that he went to see the falls alone and I didn’t go, and I felt guilty that I was so mean and should have pushed myself harder. We both eventually got over it.

A person with MS relates best with an MS peer since they are in the same shoes and understand each other best. Peers can be found online or through the MS associations. Equally important, the caregivers or loved ones also need to talk and share experiences with persons walking in their shoes i.e. their peers. Like an MSer, a non-MSer without peer support won’t survive MS well either.

I belong to a great National MS Society group on LinkedIn where both folks with and without MS have been sharing their questions/experiences. One member whose husband has MS writes a blog with him (www.relativems.com). They write some good material and take turns writing separately from their own experience and viewpoint.

They are a team.

Sometimes it’s hard for us MSers to understand why some people close to us (a mother or spouse for instance) don’t want to read something, or talk about it, or be around us. They can’t get comfortable with us having MS no matter what we do or say. Why is that?

They could be stuck in one of the “adjusting to grief’ phases like denial, anger, bargaining… For instance, sometimes a mother will feel guilty thinking that she was responsible for her son/daughter getting MS. In these situations, if each side can’t talk about their situation together, they will have to find their own way of dealing with these feelings. I had immediate family members who did not talk about MS or support me for years. It hurt. To overcome my grief I got professional counseling to help me accept the situation and focus on the non-MSers who did want to help.