How MS can affect relationships

Ian Cook examines what role MS might have in romantic relationships

With Valentine’s Day round the corner and romance in the air, it seems like a good time to look at love, life and multiple sclerosis (MS).

Anyone who has read the statistics will know that MS can be a huge burden on a relationship. Just in case you aren’t familiar with the figures they read like this – men with MS have a 21 per cent higher risk of divorce then men without the condition. Paradoxically there is little difference for women with MS. That’s according to a Swedish study carried out in 2018.

So, it’s a man thing. And as a man who recently separated from his partner of three years, I have undergone a lot of soul searching trying to work out why relationship breakdowns have happened repeatedly to me, a male prog-MSer. It would be easy to go down the role of sexual stereotyping. I could say that men are generally seen as the great providers and that once advancing MS gets going, we are unable to fulfil this ‘provider’ role, and become the needy partner, suffering a relationship breakdown as a consequence.

Of course, diving into such easy explanations, or excuses, is complete stereotyping, and involves an element of blaming the other, so it would be more productive for me to ask what role, either direct or indirect, my illness and how I handle it has played in my relationship break-ups. In so doing I can hopefully better understand my condition and the impact it has on relationships and avoid making the same mistakes again and again. So here goes.

Mental health

Starting off with how MS affects your close relationships it’s sadly true that one of the aspects of MS that I have too often been reluctant to explore is the effect it has on mental health. In a provocatively titled 2017 paper ‘Should we rebrand multiple sclerosis a dementia?’ author Prof Gavin Giovannoni looked at the mental health effects of what is, after all, a disease affecting the brain.

He said: “Compared to patients with other chronic diseases, such as cancer, patients with MS (pwMS) are twice as likely to be abandoned by their partners. Anxiety and depression are common in pwMS, and personality changes are well described. These psychiatric manifestations of the disease may explain why MS has a more significant impact on interpersonal relationships than other disabling diseases that don’t primarily involve the brain, for example, rheumatoid arthritis and cancer.”

Perhaps what Prof. Giovannoni is saying is that MS is always going to be a great challenge to any relationship, something I have found time and time again. A partner of more than ten years once told me that my MS had played a part in her choosing to leave me. My most recent partner didn’t really have a similar conversation but just left. However, as a poet she used to contribute to local magazines and during our relationship many of these poems were about me and my MS, so are quite illustrative.

One poem I have in front of me is titled “Love and MS”. In this poem there are frequent references to “a cloud” being present in our relationship. To quote the poem directly, “The cloud defines our lives in everywhere we go. It has a life of its own, MS is its name.”

Oh dear. And things get no better when you do a little literary analysis. The metaphor of a cloud is generally negative – their association with rain are all fairly melancholy and pessimistic. Clouds block the sun and the light. As to emphasise the negative influence of MS the poem goes on, “Alone I will face the storm, but you won’t be there, tears and rain, like love and pain will be the ones I feel”.

The paradox

One of the paradoxes of progressive MS is that you live with a condition that impacts greatly on your life but because it is always there you don’t really notice it on a day-to-day basis, unless it changes or advances unexpectedly quickly. For a partner of someone who has MS I guess things are quite different. MS is there all the time, like my former partner said, it can be a “cloud” hanging over the relationship. It is almost like the late Princess Diana’s famous observation that there were three of us in that relationship. It seems to me that there is me, my partner and my MS in my relationships.

A true reflection

Last week I caught a glimpse of my reflection in a shop window as I limped through a shopping centre and I was shocked to see how bad my walking has become. Although for some time I had been aware of my difficulties in walking even short distances, I was not aware what my walking actually looked like to someone else. It was not a pretty sight.

Seeing the ‘real me’ was helpful nevertheless because it forced me to accept what my MS really looks like, and is like, to others close to me. For much of my life with MS I have subconsciously denied my condition. To begin with I told myself I had been misdiagnosed. When I accepted I really had MS, I told myself it would always be ‘benign’ and when it became progressive I told myself I would be cured. All these things are little lies, but lies nonetheless.

To live a lie is a psychological strategy fraught with problems for the self- deceiver, but it makes life even more difficult for their partner. The partner can see the struggles that life presents for the person with progressive MS and are doubtless aware of their partner’s futile denial strategy. The greatest problem for the partner of the self-deceiving MSer is that they have to live that lie too although they can see through the lie with greater clarity than the self-deceiver.

Emotional acceptance

My ‘take away’ message I suppose is that how you choose to handle your MS and whether you accept it emotionally and practically will have an impact on the likelihood of your relationship surviving. My efforts to pretend that MS didn’t really have an impact on my relationship, when clearly it did, was living a lie. With hindsight I would acknowledge that living a lie wasn’t perhaps the great strategy I thought it was at the time.

Worse still, asking someone else to live your lie is a recipe for failure of any relationship because at their most basic level relationships are about honesty and telling the truth, and there is no place for little lies or even self-deceptions in them. They really do cast a cloud over a relationship as my former girlfriend and poet so aptly and accurately put it.

To quote the poem once again, “The cloud defines our lives in everywhere we go. It has a life of its own, MS is its name”. That cloud is the sad reality of my relationship failures. MS is its name.