My Mental Health Journey as a Man Living with Multiple Sclerosis

There’s still a lot of stigma around mental health, especially for men. I hope that sharing my experiences will help others to open up and get the help they need.

When I was diagnosed with multiple sclerosis (MS) over 2 decades ago, I thought I had a decent idea of what to expect. After all, I had lived with and helped care for a grandfather who was disabled from the disease.

While I knew that I might develop mobility problems and numbness and that my speech might be affected, there was an aspect to the whole MS experience that I was completely unprepared for: the way it would assault my mental health.

In the time since I was diagnosed, I’ve encountered some serious mental health issues, some of which are unique as a man living with MS.

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Early on, I was fine

I was diagnosed early in college, and think my relatively young age had a lot to do with how well I handled my diagnosis. Despite seeing the very worst that MS could do — my grandfather was completely bedridden and could not move, talk, or eat on his own — I had some youthful arrogance in me that made me feel like I was unstoppable.

It may sound odd, but it also helped that my family was pretty devastated by the news. In those early years, even when battling exacerbations, I felt like I had to be strong for them. So it wasn’t until later in my life that I started to have some trouble with my mental health.

Whether it was my life’s experiences or actual damage from the disease — or probably a bit of both — I eventually started having problems with depression.

Depression isn’t always what you think

Now that I know a bit more about the topic, I realize I probably suffered from some form of depression earlier than I thought.

Like most people, I had the impression that depression was just extreme sadness, but it can be a lot more than that. Depression can also manifest itself in other ways, such as anger, irritability, mood swings, and anxiety.

So while I wasn’t necessarily sad, I definitely experienced some other signs that I was dealing with depression. For example, I started feeling angry for no good reason pretty frequently.

Anger, particularly in men, is one emotion that many people don’t realize can be associated with depression. I know I didn’t at the time.

My MS symptoms made me feel emasculated

As my illness impacted me over the years, it would find new ways to affect my mental health. Like many with MS, I struggle with fatigue and sensitivity to warmer and colder temperatures.

While I may have appeared well on the outside, my abilities decreased, which meant that over the years, my significant others have had to take up roles that a chunk of the population still expects the man of the household to take care of.

I could no longer perform tasks like mowing the lawn and shoveling snow from the sidewalks.

Not only did I have to deal with looks from neighbors who assumed I was perfectly healthy, but I began internalizing my inability to take care of those basic chores. On some level, it made me feel like less of a man.

Adding to that, some of those same symptoms affected me in the bedroom, where I often ended up being too exhausted, drained, and fatigued to want to be intimate.

Having issues with intimacy is a huge problem for men with MS, with 50 to 90 percent of men with MS having sexual complaints and concerns.

Not all intimacy problems are about erections and orgasms, though some are. Face it, if your body won’t let you do tasks like mowing the lawn, those same symptoms are going to be a problem in other areas, too.

All of those situations felt like an attack on my manhood. I grew up with the expectation that I should be the man of the house and take care of certain things.

My condition stopped me from being what I thought a stereotypical man should be. That messed with my thought process and my self-image. It also caused me to have problems maintaining relationships.

Then the worst thing possible (to me) happened

Throughout most of my life with MS, I continued to work, building a pretty successful career as a software engineer. I’d have exacerbations and would have to miss time, but I was always able to come back to work. That is, until one day, 15 or so years after my diagnosis.

I know now that it actually happened over a few months, but I began to have more and more cognitive issues. My short-term memory started failing me, I had trouble concentrating, and I could no longer figure things out the way I once did.

I left work early one day and never returned. I’d become disabled.

I always thought I’d be safe with my career choice. Even if I could no longer walk, well, I’d have my brain, right? Apparently not. I have moments when I feel like the old me, but I still suffer from a lot of cognitive issues.

According to the National Multiple Sclerosis Society, more than half of all people with MS develop cognition problems.

This was a huge shock to me.

I was in my mid-30s and could no longer work. That’s an incredible hit to take. If you think not being able to mow the lawn made me feel like “less of a man,” you can imagine how losing my ability to work made me feel.

Losing my career was like losing my identity, and it’s an issue that I struggle with every single day. It has had a profound impact on my mental health, even leading me to seriously consider taking my own life more than once.

That may seem shocking to some, but it’s more common than you might think. Research shows that the risk of suicide is 7.5 times higher for those with MS compared to the general population.

Pain can change you

Another symptom that I never expected when I was diagnosed was pain. It’s a huge part of my life with MS and has a significant impact on my mental health.

The MS International Federation has indicated that up to two-thirds of people with MS report dealing with pain.

I experience a burning sensation in my legs nearly every day. It’s like my legs are on fire from the inside out. Sometimes this extends to my upper arms and shoulders.

I also deal with some spasticity, where the muscles in my legs will tighten up and become rock hard. It’s very unpleasant.

Pain makes it hard to ever get comfortable. It makes it hard to rest, mentally or physically.

Being in pain wears me down, until eventually, I have an outburst, yelling at something or someone until I can collect myself.

Pain has made me do things that I never expected. In the past 10 years, while already in my 30s, I started a terrible habit to help me deal with my pain: cutting.

I know that won’t make sense to most people. How does causing more pain help? Somehow, in my head, it felt good because I caused it. It felt good because I could control it.

So many of my mental health challenges stem from feeling like I can’t control anything because of my MS. Causing myself pain by cutting felt like I was giving myself something I could control.

When I would be having an especially bad pain day, I would cut myself. Eventually, this became about more than controlling pain — it was an escape whenever I felt helpless due to my disease. It became my default way of feeling in control.

Getting help

Another issue men with MS have to deal with is that it’s harder to find other men who understand these differences. MS is three times more common in women than men, which presents a challenge when trying to find others who share common ground.

In my own case, I feel like this made taking the step to get professional help extremely important, as I often felt like I encountered few people that would understand what I was going through.

This led to me keeping things bottled up more, which was a recipe for disaster.

After a lot of reluctance, I finally decided to see a therapist.

I still struggle with my mental health. However, I am in a significantly better place with it these days.

Therapy has given me the chance to not only talk about what’s bothering me but to learn strategies to help me cope. It gives me the tools I need to get through the rough moments.

If MS were causing you to slur your words, you’d probably see a speech therapist for help. That train of thought should be no different when it comes to mental health.

I now treat my therapist as another key member of my team of MS care providers, right along with my neurologist, physical therapist, and speech therapist.

Accepting that mental health symptoms were part of the disease really helped me get past some of the stigma I held regarding therapy and getting help. I also think it’s important to remember that getting mental health help doesn’t only help us, but our loved ones, too.

If you’re having trouble managing your mental health, remember that you’re never alone. It can be tough, but help is out there if you take the first step and ask.

Article originally appeared on August 4, 2021 on Bezzy’s sister site, Healthline. Last fact checked on August 4, 2021.