Loneliness and MS

Martin Baum reflects on a time when he felt lonely due to MS

In almost 40 years of living the MS dream, I would be lying if I said that loneliness did not come included as part of the package as if, say, it was some kind of cruel buy-one-get-one-free deal. But as glib as that sounds, the stats for MSers living with the subsequent consequences of depression are truly alarming.

As many as 50% of MSers are affected by it and 25% of those display at least one symptom of PTSD. Although I never admitted at the time to suffering with any kind of mental health issue, on reflection, there is no denying I was just as lonely as I was emotionally isolated.

The loneliness of living with MS represented the worst of times which, in truth, were of my own doing. I was a twenty something when I was first diagnosed and almost immediately began losing my sense of self. It was difficult to cope as I began unconsciously nesting for a life of unhappy solitude, which was not a happy place.

I believed nobody understood what even I could not understand which made for a very unhappy mental struggle. Opportunities to enjoy life were not fulfilled. Invitations to mix with friends became fewer. Conversations became sadder. My outlook more pessimistic. Before diagnosis this was not who I was, but afterwards it was who I became.

I have never referred to myself as a survivor but, and as clichéd as it sounds, it took the love and belief in somebody else to make me aware. To help me recognise and lose my MS baggage that was keeping me in a prolonged state of isolation and loneliness. To stop me obsessing about what I could not control by enjoying instead what I could.

As an MSer, the past represents long periods of self-isolation. Of many years hiding myself away and leaving it to my wife to cover for my absences with lame excuses. If only I had been emotionally stronger but that was to come later. Just how much I have moved on, however, has been demonstrated by the way I have been able to live with MS in these recent lockdown times.

Although there have been moments during Covid where it has felt as though I had hit the wall, it is the memory of having already lived a different kind of loneliness that makes me realise that nothing will ever be as lonely again.

You can read more about loneliness in the MS community and the ways that MS-UK are working to tackle this by reading the Loneliness and Isolation Report.