What I wish I knew when I was diagnosed with Multiple Sclerosis

When I was diagnosed with Multiple Sclerosis I was only 24 years old. Nearing the end of graduate school, about to set out and find a “real job”, MS didn’t quite fit into that life picture I had envisioned for myself. But I guess that’s how that works, right? You’re never expecting anything that blindsides you.

When I was diagnosed, I didn’t know anything about the disease. When my neurologist talked about what I could potentially have on my initial visit, I had to go home and do some googling. Sure, I had heard about it, but I didn’t know about it.

After I was diagnosed, I was still in the dark. I read a lot of factual articles. Symptoms to look out for, things that could potentially be in my future. But I didn’t know what would make a difference or not. All I got from my neurologist was “choose a medication, and get started”. Naturally, I thought that’s all that mattered. However, I couldn’t have been more wrong.

Someone else’s symptoms don’t apply to you

MS is an individual disease, as we all eventually find out. When I researched MS, I found stories of disability, pain and struggle. I also found stories of triumph. The dichotomy left me somewhat confused. But I should have known that it didn’t matter what I read, it just mattered what I lived. My symptoms were mine, and no one else’s. Just as someone else’s symptoms were theirs, and not mine. What I read about someone else’s struggle might never come true for me. As hard as it is to not imagine the future, it didn’t do me any good. And still doesn’t.

Lifestyle counts

At one doctors appointment, I remember asking my neurologist if anything else besides medication mattered, like what I was eating (this was before I knew better). He said he didn’t think so, but a Mediterranean type Diet wouldn’t hurt. Now I know that diet, and lifestyle changes in general, make all the difference in the world. It’s hard to choose which have the biggest impact, since they all seem to intertwine together. Diet lowers inflammation, stress management lowers inflammation and can increase quality of life, sleep lowers inflammation (among other things). I can’t pick just one that is most impactful.

Mindset matters too

This is one I’m still learning about daily. Your brain is a powerful little organ. If you think something is going to suck, most likely, it’s going to suck. If you think something is going to be great, most likely, it’s going to be great. Funny how that works. My husband has actually helped me out with this a great deal. I remember being at the hospital in the middle of a relapse, waiting for steroid infusions, hurting, not being in the mood for anything, let alone fun, and he is trying to make up games to play. Anything to get my mindset shifted and away from what is actually going on. Weird, it worked. Your brain is the most powerful tool you have, use it wisely.

Life is going to be different, and not, at the same time

Right now, almost 10 years after my diagnosis (yikes!) I’m feeling the best I have in my life. (knocking on every single wood surface around me). Life has definitely unfolded differently than I thought it would have, but then again, isn’t that how life works? Yes, I do some things differently because of MS, I know where every public restroom is, take it slower on hot days and head to the hospital once a month. But I also am living life regardless of my MS diagnosis. I run my own online Holistic Nutrition Coaching Business, I’m a wife and furbaby mom, and I still do many of the activities I did years ago. Life may look different, but it kinda doesn’t, all at once.

Sometimes reality hits hard- and that’s ok

Some days are a-ok! Some days are totally not. Both are bound to happen, and both are ok. Even though I may feel ok at the moment, I still have those times where my imagination gets the best of me. Where I think about the future and envision the worst. The tears usually come, I let them flow through. They pass, my fear subsides, and I return to “normal”. Truth be told, this is a scary disease. Random symptoms pop up at the most random times, leaving me wondering “is that MS?” “is this a relapse?” “is this THAT TIME??”. That’s all scary to think about. But giving myself time and space for those emotional moments in between has been making a difference.

These things aren’t the only things I’d wish I’d have known.. just the biggies. I’m curious, what are somethings you wish you would have known when you were diagnosed? Let me know in the comments!