From mental health and relationship issues to finding the best treatment options, there is so much I wish I had known 20 years ago.
When I was diagnosed with Multiple Sclerosis (MS), I thought I was as prepared as anyone could be. My grandfather had MS and my family and I was his caretaker, so I felt I was familiar with the disease.
Due to my family history, I considered myself to be better informed than most when I was diagnosed on my own.
Over 20 years later, I have been living with MS longer than ever. Looking back, I realize that there was so much that I really did does not have know about this disease.
Here are some things I wish I had known when I was diagnosed.
My impression of MS when I was diagnosed was that it could impact me physically. I thought that eventually I might not be able to walk anymore.
My biggest worry was that I might end up in a wheelchair or bedridden.
I continued to pursue a career as a software engineer because I felt I could still do it from a wheelchair if needed. I now know that MS can have a much bigger impact than mobility alone.
I would continue to experience issues with pain, fatigue, mental health, and my cognitive abilities.
My first problems with MS involved my legs being numb and weak. I fell a lot, and so while the falls certainly caused me pain, I had no idea that the disease itself could cause other forms of pain.
About a decade and several exacerbations later, I began to experience severe burns in my legs, arms, and upper back.
I encounter some pain every day. Sometimes I can take it – other times it gets so bad that I can’t think properly. It consumes me, can be relentless and can cause me to get carried away.
Living with pain for so long can really affect who you are as a person, and I know it has. While knowing that pain was a possibility I would not have spared me, I think it would have been helpful for me to report it to my neurologist.
When I was diagnosed, I thought that being someone who worked with their brain for a living would help and allow me to continue making a living, even if my mobility decreased. I discovered the hard way that MS can have a serious impact on your ability to use your brain.
I started to experience short-term memory loss. I also found myself often confused, as well as having difficulty solving problems and following directions.
It started to have a huge impact on my career. I started to run out of deadlines and the quality of my work suffered.
Finally, I met my boss and members of my team to explain to them what was going on. One of these colleagues admitted that if you looked at the code I had written recently and compared it to the work I had done 8 months before, it was as if it had been written by a different person. .
My declining cognitive abilities eventually became one of the main reasons I found myself disabled.
When I was diagnosed, I could never have imagined the impact MS would have on my mental health. Many of these problems arose after I became disabled and could no longer support myself. It was not the only cause, however.
My illness has caused me to go through a lot, which has taken a toll on my mental health.
Living with MS has led me to do things that I never thought possible when I started this journey, like cutting myself and planning suicide.
I wish I had been better prepared for this and more willing to ask for help much sooner than I finally did.
While it may seem obvious, I’ve learned along the way that some neurologists are more skilled at treating MS than others.
When it comes to MS, knowledge and treatment methods are constantly being updated. Not all physicians are at the forefront of this knowledge, and it can really hurt patients.
I have had several occasions where the doctors clearly treated me with outdated knowledge and treatment methods. I stayed with some of them much longer than I should have because I didn’t know any better.
If there’s one thing I wish I had known when I was diagnosed, it’s that it’s important to keep looking for the right neurologist. If possible, find one who specializes in treating MS.
While this is something I did know, I don’t really think I fully understood how important it is to minimize exacerbations as best as you can. When the myelin is damaged, that’s it, you can’t get it back.
Over the years, I have learned that the term “relapsing-remitting” is quite misleading and not entirely accurate. Although you can recover from an exacerbation, irreversible damage still occurs. Over time, as in my case, this can lead to disability.
My personal belief is that labeling someone’s MS as relapsing-remitting can lead to a false sense of security.
If I had been more aware from the start, maybe I would have fought harder for different treatment. There are also cases where I probably wouldn’t have waited that long for treatment when I thought I had a relapse.
While the type of treatment I was going through was definitely something I would go back and change, there is another area regarding treatment that I wish I had understood better. Namely, how important it is.
At one point, for about a year, I didn’t have any DMARDs because I didn’t have insurance. At the time, I looked and felt healthier, but the disease was still at work in the background.
When it comes to MS, you really can’t judge its progress by how you look or how you feel, as this disease is a silent killer who works in the shadows. You can feel fantastic, even if your myelin is eaten up. You don’t really know until it’s too late.
Going a year without treatment had serious consequences for me, and I think that is part of the cause of my disability today.
Another thing I wish I had understood about treating MS is that it takes more than a good neurologist. It wasn’t until later in my life with MS that I realized how important it was to see other specialists.
Speech-language pathologists, physiotherapists, occupational therapists, and mental health therapists should be used in conjunction with your neurologist to form a comprehensive care team.
I believe that the use of these other forms of therapy is extremely important for living the best life with MS.
These specialists are able to help you best deal with the various symptoms caused by the disease, and to me they have been invaluable.
Whether it’s with my family, friends, or other important people, MS has had a major impact on the relationships in my life.
MS is an unpredictable disease. My symptoms can come on suddenly and cause me to cancel plans often. Sometimes taking a shower is enough to kill me.
I often feel like I’m disappointing others and looking a little fluffy.
Living in pain sometimes makes me irritable and unpleasant. I also feel like I’m no longer in touch with a lot of people because I’m still quite young but I can’t work because of my illness. I feel like I have so little in common with most of my peers that it makes it very difficult to maintain relationships.
There have been many times in my life that seemed hopeless. I now know that the future is full of hope, especially for those newly diagnosed.
During my life with the disease, the progress that has been made has been nothing short of amazing. My grandfather had very few treatment options, I had a lot more when I was diagnosed, and people today have so many more options that are much more effective than those in the past.
There is no cure, but the medical world is much better than ever at slowing the disease down.
When I was younger I thought fundraisers like Walk MS didn’t mean much. After all this time, I can say that this attitude was bad. These things to do make a difference.
There has already been major progress in my life, and there is good reason to hope that one day they will fully understand this thing. Fundraising and awareness is important. I can say this because I have been around to see the difference it makes.
Devin Garlit lives in southern Delaware with his senior rescue dog, Ferdinand, where he writes about multiple sclerosis. He had been around MS all his life, grew up with his grandfather with the disease, and was diagnosed himself when he started college. You can follow his MS journey on Facebook or Instagram.