Partners of MS

Partners of MS are those people in our lives who travel some of the road with us. They hope for the best for us, worry with us and rejoice with us when things go our way. Nobody is perfect and people can sometimes let us down. I wonder how many of you experienced a loss similar to mine when roughly 50% of my so-called friends melted away after I was diagnosed? If a friend of mine at age 25 had been diagnosed with MS, would I have been any different? I would like to think I would have been helpful and caring and not let the diagnosis change my friendship, but who can tell for certain? MS can be a great clearer of deadwood and the friends that remain are so wonderful. Quite a few relationships went the same way in those early days of MS. One abruptly ended the first day I had to rest up due to MS; it was an instantanous deal-breaker. It really decimated my sense of self for a long time. Many relationships break down amongst ordinary people but the potential toll on our relationships can be much higher when one of us has MS. Sometimes we have just had the misfortune to partner or befriend a jerk; that can happen anyone. 

There are so many complexities in a relationship breakdown.  If being in love brings out the best version of yourself for another person, truth be told, MS probably brings out a very poor version of most of us. When I’m listening to Dave Grohl on my own in the car (of the rock-band the Foo Fighters) screaming out the lyrics“...you must confess, is someone getting the best, the best, the best, the best of you?” I often have to confess to Dave Grohl that people are not getting the best of me and feel guilty. 

Some partners of MS probably don’t even know that I count them part of this group. One colleague is very considerate and quietly makes useful suggestions about ergonomic improvements to help me, as well as asking how I am doing now and then, but without making too much of it. 

A neighbour chats with me regularly and we have a great oul’ chinwag about our families; their hopes and troubles, about our plans, travel, politics and the village we live in. Only very occasionally when we are not overheard, she asks me gently, “how are you doing” and she offers help if I am in a relapse. That means the world to me; she cares enough to check in on my MS from time to time, but sees that I am a fairly normal person the rest of the time. She is a good MS-partner. 

When the polymath Benjamin Franklin wrote “In this world nothing can be said to be certain, except death and taxes.” I feel he could have usefully added “and change” to that sentence to fully complete it. Nothing stays the same over time, not us, but not our partners in MS either. For those that have stuck by us, be certain that a time will come where they will need you too. I find that my husband has long been my partner in MS and has listened to me panicking about whether symptoms constitute a relapse, worrying about the efficacy of a medication, or whether I am getting worse. The poor man does too much listening and not enough talking, truth be told! In the last month I was shocked when he was diagnosed with Ulcerative Colitis. He is doing well so far but we have been really upset and shaken by this new issue. It turns out I am pretty bad at being a partner in Ulcerative Colitis, after all the decades of him listening to me and my MS. We are only now talking about it but he is naturally a reticent person, and I am quietly worried about him; it is going to take time to adjust to this new thing for us as a team. I hope I can be as good a partner to him now as he has been to me for decades.

If someone changes their relationship status on Facebook from “friends” or “in a relationship” to  “it’s complicated” that can be good or bad. It can indicate dissatisfaction with an existing relationship, or it can herald a new one starting off. The thing about MS is that it makes most relationships more complicated than normal; sometimes people let you down but sometimes others can weigh in to help you in ways that you’d never have expected. 

MS; it’s complicated. 

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