March 02, 2022
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Martí Sans/Stocksy United
I gave up some relationships out of necessity. The richness I found in my new friendships surprised me.
When I was diagnosed with multiple sclerosis (MS) a couple of decades ago, I knew that it might end up affecting areas of my life that I couldn’t yet predict. I was primarily concerned with the physical problems the disease might bring, and whether I would still be able to work.
Something I never considered way back then was the profound effect my condition would have on my social life. It’s made me give up friendships that I thought would last a lifetime, while also uniting me with people I would never have expected in my life.
When I was first diagnosed, my friends were concerned for me, and I felt a lot of love from them. In my experience, being diagnosed with an incurable condition like MS proved to me that I had people who cared about me. I counted myself lucky because that certainly isn’t the case for everyone.
While those early days showed me how strong my relationships were, I knew that living with the disease over time would be the real test. While a diagnosis can bring an outpouring of love, I learned that day-to-day life with MS can weather the very sturdiest of foundations down to dust.
My early experiences with MS followed a pattern that will be familiar to many. I would go long stretches of time where I seemingly had no illness at all, only to have life come crashing to a halt with an exacerbation. I’d be out of commission for a period of time, putting life on hold while taking steroids to shorten the duration and severity of each relapse.
After recovering from a flare-up, my life usually went back to normal. Most of the time, I didn’t even have any lingering symptoms.
Despite what seemed like a full recovery each time, those exacerbations gave me a wariness deep down. It’s an odd thing to be fine one day and then be unable to walk, see properly, or even do basic things like hold utensils the very next day.
No matter how full the recovery seems, I think going through that creates a little unease in the back of your mind. Sure, anyone can have something bad happen at any time, but when that something bad actually happens multiple times, I think it starts to alter you a bit, even if you don’t realize it at the time. You start to look at life and the future a bit differently.
I admit, after those first several years, I’d occasionally have trouble going to sleep at night because I’d be concerned about what condition I’d be in when I woke up in the morning. I didn’t realize it then, but now I see that those kinds of concerns started to create a divide between me and everyone else around me — everyone who wasn’t sick, anyway.
The train of time continued to chug along and while my relapses were more spaced out (thanks to changing medications), they would still occur. Now, however, I was unable to fully recover each time, but instead, I would have lingering symptoms. I remember one relapse that numbed the whole right side of my body. Afterward, I could never quite grip or hold things with my right hand the same way.
If the symptoms weren’t there all the time, then they could be triggered by the smallest of situations. Too warm? My vision would get blurry. Too tired? I’d slur my words. A place was too loud? I’d experience vertigo.
After 10 years of living with MS, not every problem would go away. The damage to the myelin in my nerves that occurred in each of those exacerbations started to add up, and my MS began to limit what I could do. I think that’s when the disease, and its symptoms, really started to impact my relationships.
Fatigue made me less able to deal with so much of life. Cognitive problems made me forgetful. Heat intolerance would make me leave functions early. The pain I’d experience would make me disappear from others for days on end.
Even when I could function well, I felt like I had to put all my effort into maintaining my job, which left very little of me to give to others. To many people, I’m sure I’m the one who seemed like a bad friend. Forgetting to return calls, canceling plans all the time, and never being around are not the hallmarks of a good friend, and I was guilty of all of them.
Around the same time, I started to experience some resentment toward my friends. I wanted to be a good friend. I wanted to have a life outside of work. I hated canceling plans all the time. It made me bitter to see that everyone else was living a fuller and more social life than I was capable of.
It didn’t help that this was a time when social media was really becoming popular. It gave me so many new ways to see what I was missing out on, and definitely contributed to my feelings of resentment toward people who were once my very close friends.
I also started to realize something else — that those who weren’t in my shoes couldn’t possibly understand what I was going through. A common saying bandied about by those who live with MS is, “You don’t get MS until you get MS.”
That sentiment encapsulated a lot of the feelings I was having at that time. No matter how much empathy someone has, it’s hard to truly understand what life with MS is like until they’ve really experienced it. I really started to feel different than other people. I believed that they no longer knew who I was. I was losing the commonality I had with my friends, growing in a different direction. Then an even larger divide occurred.
While it took many years and many exacerbations, eventually MS forced me from my career. I left work one day thinking it was the beginning of another exacerbation and that I would be back eventually. This was about 9 years ago, and I’ve yet to return.
It shouldn’t have seemed so sudden, but it did. The reality was that my work had been slowly slipping for several years. I wasn’t as productive as I’d been in the past. Then, when another exacerbation came along, the dam gave way. Cognitive problems that I didn’t realize I had, coupled with fatigue and nerve pain, pushed me away from a career that I had spent most of my life building.
No longer being able to work was a shock to my mental health. I was raised with a strong work ethic. I also loved what I did for a living. My career was not just a way to support myself; it was a huge part of my life and my identity.
Suddenly, though, I was still in my mid-30s and disabled. While I know that I did everything possible to keep working, that didn’t stop me from feeling ashamed. Logically, I know that I didn’t choose this, that it’s not my fault, but that didn’t change the raw emotion of it all. Suddenly, I felt embarrassed in front of not only friends but family too.
It’s still a struggle for me. You grow up, go to school, and work. That’s what life is supposed to be, that’s what society taught me I was supposed to do.
Not only was I ashamed of my new existence as a disabled person, but of how the very basics of life completely changed for me, too. I finally had more time on my hands, but I was unable to afford to do much. I went from making an incredibly good salary to fighting to afford the bare necessities on the minimal money that disability insurance provides. Money isn’t what friendships are based on, but not having it sure inhibits what you can do.
My everyday symptoms also became much more consistent and problematic. Put it all together and I began to feel like I couldn’t relate to any of my friends. We now lived completely different lives. As a single disabled male in his mid-30s, it felt like there were so few people who could possibly have things in common with me.
Despite all that, I still maintained some friendships, though they were never the same.
Not only did I find I was no longer able to relate to these friends, but I also began to experience jealousy: Here are people with careers, significant others, and even families of their own. They’re living well, they have great housing, they take fun trips, and they’re doing it all without waking up feeling lousy and in pain. These were all things I had expected in my own life and now realized I’d never have.
I withdrew from many longtime friendships. I’d changed too much. My life should have been like theirs, and it wasn’t.
I hate to admit that I was jealous, but I was. How can you not be jealous in that situation? I withdrew from many longtime friendships. I’d changed too much, and I couldn’t handle constantly hearing about and seeing their lives. My life should have been like theirs, and it wasn’t. I couldn’t bear to witness it anymore.
I’d survive, but to do so, I had to move on.
While I severed many relationships, that didn’t mean I was giving up. One of my favorite quotes comes from Marine Corps Gen. Oliver P. Smith during the Battle of the Chosin Reservoir in the Korean War: “Retreat, hell! We’re not retreating, we’re just advancing in a different direction.”
It may sound like I was retreating from people and from myself, but in reality, I simply knew I had to make adjustments to survive. And I could not survive while maintaining the relationships of my past. My ailing mental health wasn’t strong enough for that.
Many folks will say with pride that their illness hasn’t changed them. I’m not one of them. MS has shaped the person I am today and, honestly, I like that person.
Another reality is that I’m not the same person I once was. I’m sure many folks would say with pride that their condition hasn’t changed them. I’m not one of them. I’ve now lived with MS longer than I lived without it. It’s shaped the person I am today and, honestly, I like that person.
Life with MS has made me more empathetic. It’s not that I was an awful person before, but I’m different and definitely more caring. I’m also into different things now — I have new hobbies and interests. I’ve learned to enjoy the small things in life.
I’ve adapted to the life that I have now but to do that, I first had to give up the life I once had.
Though it hasn’t been easy, I have made some new friends. They know me only as I am today, and I think that makes a big difference for me. I am never contending with the ghost of Devin’s past; I’m just the same Devin that they’ve always known.
I feel no shame or resentment toward my new friends for my situation in life. Starting fresh has allowed me to be more accepting of the life I have now because I no longer need to compare it to the life I once had. I embrace my current lot in life. I have MS and I’m disabled, but my current friends have known that from the beginning. For me, that’s comforting.
Is the way I’ve handled my former friends ideal? Of course not. I’m sure many friends and family from my past are unable to accept it. Many may even have negative thoughts about me because of how I handled things. I’ve done what I’ve done because I’m still a bit of a mess. I still struggle a lot. But you do what you have to do. It was the only way for me to survive.
Since then, I’ve developed a lot of virtual friendships with other people who live with chronic illness, and I think that’s helped a lot. I talk with so many people regularly — people of all ages and from all walks of life — to whom I probably would never have spoken a word in the past.
Life with MS is difficult, and in reverse of how it interrupted friendships in my past, it’s enabled me to meet new people today whose lives are similar to mine.
Maintaining friendships while living with a chronic illness like MS is difficult. Life with this disease may alienate you from people who were once close to you. You may be forced to re-evaluate the relationships that you have, but there is nothing wrong with that. You have to do what you need to do to survive.
A key to that survival can be realizing that you aren’t as alone as you feel. Other people are out there who have gone through what you are going through. If you can connect with them, your life will be much richer.
Fact checked on March 02, 2022
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