Did I Alter My Life Enough After My MS Diagnosis?

When I was in my early 20s, I awoke one day and fell flat on my face when getting out of bed. I could no longer use my legs properly. Other issues would follow, and eventually, I was diagnosed with multiple sclerosis. It was a life-changing moment. I was still in college, I had my whole life in front of me. How would this impact that life? Like most people who get diagnosed, I thought, what now?

I lived with a grandfather who had MS, and I still had no idea what to expect or what to do. I took some steps to better prepare for a life with the disease, but over two decades later I look back and realize there are plenty of other steps I wish I had taken.

Do I let this take over?

A diagnosis of MS can be life-altering for some people, but how much should you alter your life because of it? I was young with a lot of hopes and dreams and with a plan in place to make those dreams happen. While I started treatment and followed my doctors’ instructions, I didn’t drastically alter my goals. It took me a tad longer to finish school because I had exacerbations, but I still followed my general plan that I had in place before I was diagnosed.

Looking back, I’m happy that I didn’t let my diagnosis drastically change my life. Multiple sclerosis didn’t change my path, it just added some speed bumps along the way. Disease or not, people are going to run into some unexpected speed bumps.

Necessary considerations

As I embarked upon my career, my illness did impact the way I looked at various jobs. Because I live in the United States, I had to make health insurance a major consideration when looking at staying in or taking jobs. That’s a major way that a chronic illness can really hamstring someone in a country like mine. Above everything, a company’s health insurance, not only providing it but providing a quality version of it, was massively important to me. Along with insurance, things like 401k options and amount of sick time also began to be big concerns for me.

Even as a young and single person, my MS diagnosis made me look at the total compensation packages that places were offering. I wasn’t only concerned with salary, and I imagine that had I not had MS, I might have ended up looking at things differently. So MS didn’t take over my life, but it impacted some decisions I made.

It’s hard to plan for everything

I looked at job considerations very cautiously, and I also did my best to stay in as good of shape as I could. It’s hard not to worry about the future, especially when your disease keeps popping up to remind you. Despite that, I eventually took my dream job across the country, with a startup in every sense of the word, knowing that I wouldn’t have insurance at first, knowing they wouldn’t have a 401k or other future planning services.

As I got older, I sort of threw out the caution and concerns I had (you get by long enough and eventually you figure you will always get by). This led to me being off disease-modifying medication for a small stretch of time, which, while it’s not possible to know, is a likely reason why I am disabled today. I’d been cautious and calculating for so long and then suddenly stopped, and I eventually paid the price.

Keep following those dreams

You know what though? I don’t regret it at all. I took a dream job and lived a dream life for a bit there. It would be easy for me to sit here and say that I should have been more cautious, that I could have planned better for my future, and I should have. I know logically that’s correct and I know my life would be much better now if I had, but I can’t regret it. I also know that I wouldn’t have been able to take that dream job had I not been cautious and well-planned leading up to it.

Working hard to find the right doctor was key for me. Having good insurance kept me on treatment and kept the disease at bay, which let me take that opportunity. Putting money into a 401k and into savings would eventually be so very helpful when I eventually did become disabled (though that stuff goes extremely fast). So you have MS? Take precautions and definitely plan ahead as much as you can, but please keep following your dreams.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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