Two’s company—how Barbara and Joao share their MS journeys with their loved ones

maintaining relationships

It can be difficult to keep relationships going strong after an MS diagnosis. MS One to One advisors, Barbara and Joao, discuss how they share their MS journeys with the people important to them.

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. We knew nothing about MS, and obviously our fears came from a lack of knowledge. My first doctor’s appointments were crucial to dispel misunderstandings about MS and understand what might happen next.

I had an honest talk with my wife. She was the first person to suffer secondhand symptoms due to my inconsistent mood. At the time, my son was only 9 years old and he could not understand what was happening.

The news spread out to the wider family and the phone calls came in. It was painful to tell the same story 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 is possible and it does help. Starting with yourself, you must understand that things are not the same as they once were. Living with MS requires a constant readaptation to your new reality and you should not hide the disease from those around you.

Family, friends, and work partners must be part of the solution, and they must realise that you’re still you. They must not forget that you are the same person—a friend, family member, and 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 must not give up preserving them. They are crucial to help overcome any struggles and to increase self-esteem and confidence during challenging times.

My partner at the time left me shortly after I was diagnosed with MS. They were unable to cope with the dramatic changes taking place in my life. That was 9 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 MS-ers, and opinions seemed to be divided; some people said they would not mention anything until after a couple of dates, while others mentioned they would be upfront from the beginning.

I felt strongly that I did not 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 while I made 2 brilliant friends along the way, I still remained single and became 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 have not stopped talking since.

“I am a very different person now than I was 9 years ago, and, in a way, those years taught me a lot about resilience, tenacity, and embracing life as much as possible.”

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, and how MS affected my life now, and we had frank and open discussions. 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 9 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.

Relationships Matter
Barbara and Joao have each had their own experiences keeping relationships strong with MS. Remember, everyone's experience with MS is unique. The ways you find to stay in touch with loved ones will be unique too!

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