Telling People About Your Diagnosis
When I think back many years to the moment I was diagnosed, one of the many, many thoughts that jumped through my head, was, “How am I going to tell people? What will I tell them?” I was primarily concerned with my family and my close friends. People who knew I was sick and were extremely worried about me. The people I cared about on a day-to-day basis. How do you tell someone that you’ve just been diagnosed with an incurable and potentially debilitating disease? I’m not sure there is anything close to a correct or easy answer, but I thought I’d share my experience.
It seems to surprise many people, but I got my official diagnosis over the phone. I’d had trouble with my legs being weak and then not working at all, which led to me being brought home from college, and even included a stay in a hospital while they tried to figure out what was wrong with me. I regained the use of my legs, saw more specialists, and then stayed at my parents’ place while I waited for test results and for someone to tell me what was going on with my body. Unlike many who get diagnosed, my family and I were actually pretty sure it was MS. We have a history of it in our family and I even grew up helping care from my grandfather, who lived with us because he was disabled from the disease. So we knew, but we didn’t have the official word. I was sure it was MS, and I think my family was sure, but obviously hoping for something else.
It was official
One day, the phone rang, 18 years later and I still remember answering it in my parent’s kitchen. They gave me the news we all expected, I have Multiple Sclerosis, it was official. I honestly didn’t think about the implications this would have on my life at that moment. I was more concerned about how I was going to hang up the phone and then turn around and tell my parents. My immediate fear was how they would handle it (that was really a mindset that would persist a lot for me in the early years with the disease). This was especially hard because they did know about the disease, they’d already witnessed some of the worst this illness could do. So I told them, hugged them both, there were tears, and then I reminded them that, well, it’s not cancer and at least it’s not AIDS (to which my mom briefly stopped crying and said, “wait, how would you get that?”). I did my best to assure them that things would be ok, that I was a fighter (often too much of one), and I would fight this too.
After that, I had some of my close friends come over, so I could tell them in person. It was again very hard because what they knew of MS, they knew from my disabled grandfather. Many of them worried how long it’d be before I was in a wheelchair. They were all amazing and encouraging, very upset, but extremely supportive. They were very helpful in informing other friends for me as well, something I am still very thankful for, because it’s tough to keep explaining something like that, not to mention, it’s emotionally draining.
That’s not everyone’s story
In some ways, I was lucky that my friends and family already knew a good bit about Multiple Sclerosis. For many people, that simply isn’t the case. Knowledge about the disease doesn’t seem to be very common. People seem to either think that you will be in a wheelchair soon, or, they’ll mention something like, they know their second aunt’s gardener’s grandmother has MS and they are fine (by the way, please never say something like that to someone who has a disease). Telling someone that you have a disease, when they know next to nothing about it, or worse, think they do, but don’t, is pretty difficult.
Emphasizing key elements about MS
I still meet many people that I have to try to explain the disease to and I find it difficult. I love to use the phone charger story that I used in this article. I also find that there is a need, especially with close friends and family, to emphasize a few key elements of the disease: it is incurable (no matter what you read, there is no cure), it is unpredictable (I can be fine one minute, terrible the next, I’ll cancel a lot of plans), and it is invisible (I may look fantastic, but I am a mess inside). Aside from how the disease works, I feel like those three elements have the most effect on my friends and family, so it’s important to emphasize those. For those that worry, I tell them, that while it may be difficult, this is a good time (if there is ever a good time) to be diagnosed, because there is some amazing research going on, and we already have a lot more effective medications than we did even ten years ago. I tell them that things will be OK, but I need their support. I then tell them I may send them some things to read and I’d really appreciate if they read them (that is literally how I found MultipleSclerosis.net, I was always sending people to links from here).
It's hard for them to hear the news
It’s not easy to tell our family and friends, whether they have knowledge of the disease or not. I think it’s easy to forget how hard it is for them to hear the news that you’re delivering, so it’s important to be prepared for that. It’s also important to highlight a few key aspects of the disease and remind them that you’ll need their help and support, even if that only means reading a little bit about the disease. Perhaps most important, is for you to wait until you are ready to disclose, because telling people you have an incurable disease, is every bit as important to them as it is to you.
As always, please feel free to share your diagnosis stories in the comments, seeing other people’s experiences can be very beneficial to the newly diagnosed.
Thanks for reading!
Does anyone else in your family have MS?