If I had to write this letter shortly after being diagnosed with multiple sclerosis (MS), it would have had a much bleaker tone. I went from knowing little-to-nothing about MS to lying inside an MRI machine, waiting to learn what was causing those strange symptoms I had. Of course, I would later hear the words from the doctor confirming an MS diagnosis, and my life would change forever. That was terrifying at first – the thought of all the things that were about to change. I hadn’t known anyone who had MS, and before my diagnosis, I had never researched it either. I didn’t really have anything to relate to.
But I never felt alone. I had you by my side through my best times and my worst, my brightest moments and my darkest. I hated when MS made me feel my lowest, but you were there to help me push through. I remember after my diagnosis, when the reality of the situation was starting to sink in, I offered you an easy way out of our relationship. It didn’t seem fair to ask you to go through this with me; I didn’t even want to go through it.
Fast forward to now, I’m so amazed at how far we’ve come. The things we have been able to achieve keep me motivated. It took a lot of changes in our lives to get here: new medication, healthier diets, and focused exercise. But with each new step of the way, you took a step with me. We’ve learned to manage stress and how to communicate on a level that other couples strive for.
But I know it must take a toll on you to deal with the unexpected moments where MS shows its invisible side. The numbness and the pain, or the fatigue and the brain fog, come without warning and sometimes, I don’t notice it sneaking up on me. You still manage to take it all in stride. You were there for me when I pushed through work and other responsibilities as I experienced symptoms that my co-workers couldn’t see.
Fear can play such a huge factor when someone is first diagnosed, and it’s probably the hardest part to control and manage. I remember when I started using a cane for the first time shortly after my diagnosis – something anyone in their twenties would not be thrilled about. The fear of needing the cane was terrifying, but you helped me get through it. You gave me the power to get up and get my day started, even though I didn’t want to. Putting in the work to get to this point was the important part, and I hope every MS fighter has a Marc in their life to cheer them on too.
Now, we advocate for MS by being open about our journey and helping others who are newly diagnosed or living with the disease. I know that even the word ‘diagnosis’ can sound scary. I’m hoping that we can help take the fear and stigma away. I want to help encourage others to start making healthy choices and inspire them to sustain that lifestyle. I want a newly-diagnosed person to know that not every diagnosis is the same; you have to work with what you have, but the goal is to live a life that is fulfilling to you.
If I wrote this letter just after being diagnosed with MS, it would have been written from a dark place. To be happy in the place I am now makes me hopeful about what I may write in a letter twenty years into the future. I know that I would not be at this place without you, and I am thankful every day that I have someone as special as you!
Hi, I too have MS, was diagnosed in 1994, I felt so depressed. I went to many support group meeting and met many friends dealing with the same thing. They were such a help to me. My husband was at my side until he passed away in 2016. I still miss him. My support group now meet on line and I do enjoy that.. I live in a seniors apt building and have wonderful neighbours, they are so good to me. I am a christian and have a wonderful church family. I am learning to live a better life. thanks so much for sharing, I was encouraged. xo
Thank you Marc and Richard for sharing your story. It has resonated with me on a few levels. I am a caregiver to my partner who has had MS since 2007, and we have been together for 25 years.
MS can be isolating. These feelings can be magnified when you are part of the LGBT community, and are relatively young. Up to this point, we don’t know another LGBT couple facing MS. Very much appreciate hearing your story, as it leaves us feeling that much less alone.
Well this is just beautiful. Goes to show how important it is to give and accept the support people offer eachother.
Your letter to brought me to tears. As a small boy, Marc was always the sweetest, soft spoken, but yet very chatty red hair and big blue eyed boy. Very giving without the thought of what he’d receive in return. He would buzz around like no one else was in his world. Loved everyone and everything in site and very curious if something caught his attention.
I remember the day he told me your diagnosis. We were going somewhere and Marc asked me not to give mention because you would be using a cane. The softness and quiver when he spoke, reading your letter; I now realize he was staying strong for you.
You have a very special person and I’m so glad that Marc keeps you strong. You caught his attention and stopped him buzzing around. His smile always lite up a room but nothing compared to when he smiles at you and on occasion tips his head to one side with endearment.
I love you both very much ❤
Cousin Lisa xxxxx
Ps dinner next time I’m in 😎
Omg …That was beautifully written.