When I was first diagnosed with MS it was hard to come to terms with what had happened. For me and for the people closest to me, it seemed like we were stuck in some kind of limbo. None of us knew anything about MS and obviously our fears came from this lack of knowledge. My first doctor´s appointments were crucial to dispel misunderstandings about MS and to come to understand what might happen next.
I had an honest talk with my wife. She was the first person to suffer second-hand symptoms that were due to my inconsistent mood. This is actually what gave rise to my diagnosis. At that time my son was only nine years old and he couldn´t understand what was happening.
But the news spread out to the wider family and the phone calls came in. It was painful to tell the same story every over and over. The solution? Demystifying my MS to others. It may seem like a huge challenge to new patients and yes, it varies from patient to patient, but it’s possible and it helps. Starting with yourself, you must understand that things aren´t the same as they once were. Living with MS requires a constant readaptation to your new reality and you shouldn’t hide the disease from those around you.
Family, friends and work partners must be part of the solution, but they must realise that you’re still you; they mustn´t forget that you are the same person; a friend, family member and a competent person despite your MS. Nowadays those around me have stopped seeing me as The Patient.
Maintaining relationships with MS may seem difficult in the beginning but you mustn´t give up preserving them. They are crucial to help overcome any struggles, and to increase self-esteem and confidence during challenging times.
When I was diagnosed with MS, my partner at the time left me shortly after. They were unable to cope with the dramatic changes taking place in my life. That was nine years ago.
A good friend of mine dared me to start online dating. Always up for a challenge, I agreed, although reluctantly. The main issue buzzing around my mind was when exactly to bring up MS? I asked my fellow MSers, and opinion seemed to be divided; some people said they wouldn’t mention anything until after a couple of dates, while others mentioned they’d be upfront from the beginning.
I felt strongly that I didn’t have anything to ‘hide’, so I chose the upfront strategy, but this led to never hearing back from most of the people I started talking to. It hurt deeply and made me question whether I was doing the right thing. Yet, I also felt that if someone cut contact after the grand reveal, they probably were not worth bothering with anyway. I viewed it as a handy filter.
I dated a few people, and two are now brilliant friends, but I was still single and becoming ever more disillusioned. I decided to have one last roll of the dice, and after someone caught my eye, I swiped right. There was something about their photographs that intrigued me, but I resigned myself to yet another Valentine’s Day as a singleton with just the cat for company and Bridget Jones on the telly. But a few hours later, my phone buzzed, and well, we haven’t stopped talking since.
We met up in person within days, and now I have someone extraordinary in my life. She was interested to hear about my symptoms, the treatment I had had, how MS affected my life now, and we had frank and open discussions about everything. She is completely unfazed by my MS because she sees the real me, the individual, beneath the MS diagnosis.
I am a very different person now than I was nine years ago, and in a way, those years taught me a lot about resilience, tenacity, and embracing life as much as possible. At times, it has been a lonely road adapting to life with MS. Now I have someone beside me, and it is beautiful. My advice for others with MS would be: keep searching.