The Mighty Logo

Why I'm OK With Being Defined By Multiple Sclerosis

The most helpful emails in health
Browse our free newsletters

I was diagnosed with multiple sclerosis (MS) in 2011 and I distinctly remember that I cried more so out of relief than sadness. I finally had an answer to what was wreaking havoc on my body. While the doctor explained all the repercussions of having such an illness, he failed to mention the emotional and financial strain I would begin to experience.

I’ve met a few people from different walks of life with varying ailments and I’ve heard them say on more than one occasion that their disease doesn’t define them. So why do I feel like it actually does, at least in my case? I began to ponder if I just wasn’t coping well with the reality of my illness and if I should seek professional therapy.

Following my diagnosis, MS continued its war and I had numerous consecutive flares. Some left me immobilized while others left me in the hospital, but all of them left me in a terrible state. I was barely able to walk and take care of my children, let alone work. This led me to lose my job. As if the physical strain wasn’t enough, now I had to worry about the loss of income. MS and its frightening possibilities occupied my mind almost exclusively. The diagnosis amped up my anxiety to the point that I experienced daily panic attacks. It was wringing me out dry so much so that I felt every drop of who I once was dripping away. I realized I needed to get a handle on this, but even though I revisited the notion of seeking therapy, I decided to let this play itself out.

It’s impossible to fight a force that’s unyielding and especially incurable. It brings me back to something my husband once said: “You can’t worry about the stuff you can’t change. It gets you nowhere and it’s a waste of time.” I used my husband’s piece of wisdom as my mantra. I left my health in my neurologist’s very capable hands – a man I truly trust and respect. I began to focus on the little victories such as cooking dinner, walking our dog or watching the birds at our feeder. These are things people tend to take for granted but I no longer do so. How contradictory it is that multiple sclerosis was teaching me how to live. It’s a painful yet constant reminder of what my priorities need to be, whether it’s just hanging with my friends around a fire pit or hearing my sons laugh over some inside joke. To this day my family and I struggle especially financially since I had to quit my most recent part-time position because of the toll it was taking on my body. Does that mean I’ll give up and never seek employment again? Absolutely not! Quite frankly, as little as my part-time income was, it still was needed desperately. Being around the house all day actually makes my anxiety worse because I tend to overthink and overanalyze things. So being employed isn’t only a financial necessity; it’s also a psychological one. Even though MS fatigue is a problem, I’ve noticed that in keeping myself busy both physically and mentally I end up having more energy. I guess Newton really knew what he was talking about with that rule of physics. This disease has stolen a lot from me and my family. The worry and emotional damage this has done to my husband and sons still angers me. It has no right to cause this collateral damage but it did all the same. Having to ask my then 16-year-old to help take the IV out of my arm after a seven-day round of steroids was something I never imagined I would have to do. Maybe that’s why he has decided to go into the medical field, I don’t know, but if it is then he has taken something ugly and turned it into something beautiful and I couldn’t be more proud.

As I went on with life I began to understand why I felt that MS most certainly does define me. To argue otherwise seemed to put me in the category of denial instead of acceptance. Thus, out of sheer necessity, I reluctantly embraced my disease because it was the only way I could heal emotionally. Multiple sclerosis dictates my day-to-day life more than I’d like to admit. Will I have enough energy to attend that family function? Will I have enough cognitive clarity to help my son with his homework? Can I cope enough with my nerve pain to find a keep another job? When will the next flare-up hit? These are just the few questions that go through my mind as soon as I wake up in the morning. Besides, it’s a bit hard to ignore the permanent damage in my right eye considering I’m blind in it.

By accepting my illness as being a part of who I am, I’m able to adjust my activities accordingly. Don’t get me wrong, I still get angry or depressed about it. There are times I just want to sleep the whole day away so I don’t have to deal with it. Sleep is my escape from all the hardships of life. Dreams are the only place where I feel normal, where I am “normal.” All my issues have disappeared and anything is possible – but I know this would basically be like running away. I have a family and a household to care for and that’s what encourages me to get out of bed each morning. Honestly, if it wasn’t for them I think I would have sunk into a deep dark place that would’ve been very difficult to climb out of, so I’m extremely grateful for each one of them. Letting MS be a part of me was my way of getting on with my life.

So yes, my disease defines me, and yet so does being an author, a mother and a wife. We all wear many hats; it just so happens that for me, multiple sclerosis is one of them.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

Originally published: January 20, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home