My Boyfriend’s Relationship with MS

When I found out that my weird eye pain/bluriness was probably MS, one of my first thoughts was my boyfriend. We had been dating for about four years at that point. One of those years was extremely casual, we went to college 8 hours apart and we wanted to do our own things, but we couldn’t stay away from each other. We spent all four years of college visiting each other when we could, and we were pretty serious at this point. I had recently moved to Boston and he was at school for one more semester, so we were now about 16 hours apart from one another. We were so serious that he had plans to move to Connecticut after graduation, something I never thought he would do. We are both from Connecticut, but he had fallen in love with the South during college. When we went to college, we both went very far away to get away from the small town we grew up in, so this felt like a big deal. I knew he wasn’t moving to Connecticut just for me, but he had told me that it was a part of his decision. Woah. 

So when I was going through the scary “what is wrong with me?” process, my boyfriend was two months away from graduation and very very far away from me. I thought about him almost immediately for a few reasons: 1) I wanted him to be there to comfort me and 2) I was scared that he wouldn’t want to be with me anymore. 

You heard that right. After four years and a pretty serious relationship, I was terrified that he was going to leave me. He gets mad at me whenever I bring this up now. A few months in I admitted this fear to him and he was upset, rightly so. He was upset that I had so little faith in us, in him. But anyone who has gone through the rollercoaster of emotions that I have may know that there is no rational thinking when you are first diagnosed. Was it irrational to think that he would just leave me because I was diagnosed with MS? Probably, but can you blame me?

We were both 22 when this crazy journey began. He was still in college. We hadn’t lived near each other in four years. And, frankly, I was wildly insecure about the next phase of our relationship. Add some MS to the mix and I was like “there goes my relationship!”. 

He didn’t leave me. In fact, he was my MS expert in those first few months. Whenever he couldn’t focus on studying, he started Googling. He read all about the process of getting diagnosed, the possible treatment options, and the possible hurtles I might face. Where I was afraid to Google, he sifted through all the scary stuff and gave me the facts. He supported me, and he still does. 

Don’t get me wrong, it is not easy. There are definitely days where he forgets why I don’t always feel great or why I am so tired. There are even times when he forgets that I have a doctor’s appointment. After all, he works about 60 hours a week and is still sorting out this whole “adulting” thing himself. I am now the MS expert and he does a lot less Googling, but he supports me. Even when he doesn’t know how to act or what to say or when I want his help and when I don’t, I know he’s there with me.

Lately, I’ve noticed MS creep into my relationship more and more. I’m more sensitive than I like to admit. My anxiety is worse than ever and gets in the way frequently. He gets frustrated with me. He doesn’t love that I cry at the dinner table because my mom has a virus and that means I may get a virus and that will lead to the inevitable MS spiral. It’s not his favorite thing about me. I don’t expect it to be. There is so much we will have to work through, so many issues that may come up in our relationship that wouldn’t have before.

I am not going to lie, I have definitely pulled the MS card during arguments. Those ones where I am just super insecure about something usually end in me balling asking him why he would want me and not someone normal. It’s sad to reflect on that, but it’s that subconscious feeling that I think many people with a chronic illness feel. Why choose me and all this baggage? 

So, I still get nervous that he doesn’t really know what he’s committing to. I wonder if he reads those articles about incontinence and nonexistent libido, or if he rather not think about that for now. I wonder if he realizes that there may be a time where he has to take care of me and may have a partner in life who can’t do all the things he wishes she could. My mom still accompanies me to all my appointments, but I hope he takes her place in that role someday. I hope it becomes more and more normal for us.

Unfortunately, my boyfriend has a relationship with MS because he has a relationship with me. Though I don’t view MS as my identity, I can’t ignore it. You can’t ignore something that major in a relationship. Relationships are never easy and, as usual, MS makes things harder. I am thankful every day that I have him. He has been such a crucial part of my support system. IT’S HARD THOUGH.

Am I just a clutz?

I’ve always been clumsy. My family says I’m as graceful as a bull in a china shop. It’s funny because I danced my entire childhood – ballet, tap, jazz, hip hop. Yet I still find a way to trip over the slight bump in the sidewalk and spill water all over myself consistently. I am no ballerina.

It’s weird when you have MS, you start to question everything that happens in your life. What’s that tingling in my hand? Is my foot really asleep or am I just losing feeling? Today, it was “did I just drop my entire bag down the stairs at work because I’m clumsy or because I have MS?”.

Yeah, you heard that right. My entire bag. My Bluetooth headphones bounced out of their case and down two flights. There was a fork there and a pill case here. And the noise it made in the 15 story stairwell was deafening. You’d think that I had fallen down the stairs (not a far-fetched assumption). I gathered everything as quickly as possible, only one person walked in as I was crouched over in a panic trying to clean it all up. To say the least, it was very embarrassing.

As soon as I got everything gathered and made it to my destination I started thinking “wait, was that MS? Did I lose feeling in my hand and didn’t notice? Did my brain not send the right signals to my hands? Is this my future???”

The answer with all of these things is I don’t know. That’s my reality. My anxiety has been getting the best of me these past few months. I am trying to live in the moment, appreciate the life I have while I have it. It’s hard. Everything is hard. But now I am laughing every time I think about my headphones bouncing around a stairwell! It was pretty funny….

Disability Awareness Month

As October comes to a close, I have been thinking a lot about Disability Awareness Month. It isn’t a well known thing. I only know about it because I work at a university with a strong disability advocacy program. But it is so important. 

Since my diagnosis with MS, I have been fortunate to not show any visible signs of the disease (yet!). I realize that my future may look very different and I may face many more obstacles than I do now. I see the MS warriors who use a cane or other mobility aid to get around. I see the MS warriors who suffer fatigue that makes it difficult to work their 9 to 5. I also see the MS warriors struggling with their mental health and all the other side effects and implications of this chronic illness. 

So this month I made a point to go about my life conscious of what is and isn’t accessible to people with disabilities. Once you start thinking in this mindset, it is shocking to realize how little accessibility there is in our everyday lives. Despite the laws that have been passed and the strong advocacy efforts of many, our world is still very inaccessible. You will see the obvious things like people parking in handicap spots without a sticker and the less obvious like the removal of curbs in a suburban neighborhood causing chaos for a blind resident. 

When you have an illness that will most likely lead to a form of disability, you start thinking about these things more, but I think it is something we should all be thinking about. We should all be considering how mental and physical disabilities affect the people around us, especially when we can’t see those disabilities right in front of us.