Maybe It's a Family Thing
"Does someone else in your family have it?" It's one of the first questions that comes up when I tell people I have MS. As the jury is out regarding the role genetics play in MS, I didn't dig through the family records to look for MS further back in our family.1
I thought I had finally let go of the thought until I got some news that would change that: another member of the family received an MS diagnosis. Being reminded of how unpredictable the disease is, I enter a new phase of the role MS plays in my life.
My family's reaction to my diagnosis
As I write this article, I approach the ten-year mark of my diagnosis. During this time, I've encountered all sorts of reactions, from a gentle "hm" to a wide-eyed and audible gasp. Telling my family was the hardest; when such big emotions stir, it's hard to reach each other. With time, we found ways to talk openly about my MS. We realized that no matter how hard we tried, it would not be possible for them to put themselves in my shoes. But as I have become both a patient of and a bystander to MS, I wondered if that would change anything in how we understand each other.
Now we have multiple family members with MS
Fast forward a few months, and I'm in the neurologist's office, but this time I'm not the patient. I came to support the family member as they received their first dose of DMT. As I listened to the nurse explain the procedure and administer premedication, I was transported back to my first dose of DMTs and how disorienting that experience was. Being there in that office felt surreal. I could finish the nurses' sentences for her. She knew I had MS, and she asked me a few questions about my treatment history. We talked like colleagues on a lunch break, throwing around all the MS jargon, procedures, and side effects and joking about things treatment-related. I was grateful that I could support the family member through that experience. The diagnosis process is long, information-dense, and, at times, overwhelming.
It is a personal and complex experience
After the infusion, I wondered whether or not the family member got a better understanding of my experience. Part of me expected a comment from them along the lines of "I never imagined this is what you went through." That didn't happen. There was also no Hollywood-esc bonding experience between me and the family member. I was instead reminded of how MS is individual for everyone. Sitting on years of experience, I can humanize the experience for them, but not much else. Going through a diagnosis is complex, with so much information and things to consider. As much as I wanted to tell them about my extensive knowledge of MS and treatments, the experience was not about me.
Is MS hereditary?
Allowing my family member to go through the process on their terms, I instead reflected on what the news meant for me. I wrestled with it for a few years, but I accepted that I would probably never know why I got MS. But now that it was "in the family," I couldn't help but entertain the idea of it being hereditary. However, I couldn't find much data to back up my suspicion. Research has by no means ruled out its importance in the pathology of MS, but so far, there is no easy, straightforward way to explain why some of us get it.1
But for a second after I got the news about my family member's diagnosis, I felt a sense of relief. Finally, an explanation! It was sweet but short-lived.
A new perspective on this family thing
Now that I've experienced someone's MS diagnosis from the sideline, I find it challenging, even when I'm not the one in the thick of it. Most importantly, I understood how scary it can be when something happens to a family member. In those moments, it's so hard to find the right words. If it's family, it's usually a bit complicated. Looking back, I understand my family's reaction to my MS in a new way that makes a lot more sense. Support and love come in many shapes and sizes. So, as the infusion machine whirred and clicked that day in the neurologist's office, we mostly sat in silence. No words were needed. Come to think of it, maybe that's a family thing.
Were you misdiagnosed with something else before receiving a MS diagnosis?