Friends and family: They can be our greatest gifts and sometimes also the biggest thorns in our side. They can be the most supportive and at the same time, the most annoying — especially when it comes to navigating a chronic health condition like MS. You may think your new diagnosis is a personal health journey, but most of the time that’s not the case. Family and close friends will be joining that journey with you.
Coming to terms with an MS diagnosis can be a lot to handle — there’s a lot of information to process and questions to answer. One of those questions inevitably is, “Do I tell my family and friends?”
Personally, I didn’t really have a choice. My diagnosis and the events that lead to it were so abrupt that the incident just flew through the grapevine. Suddenly just about everyone in my life knew that I had been diagnosed with MS. It was almost easier that way because I didn’t necessarily have to have that conversation with everyone: The gossip grapevine did it for me.
However, sometimes I look back and wonder what it would’ve been like if I could have had more time and space to focus on myself and decide how to narrate the story of my new health journey. Whatever you decide — whether to wait to tell family or friends about your diagnosis, or to tell them immediately — is up to you. It’s your diagnosis, it’s your story, and I hope you have the opportunity to share it as you’d like.
OK, now your closest friends and family members know, and they may already have pre-determined ideas of what MS is. You may hear:
“I had a friend in college whose cousin had it!”
“Your second cousin’s aunt’s neighbour had it!”
“I read that [insert celebrity name here] has it!”
It seems like everyone knows someone who knows someone who had or has MS — and they’re going to tell you about it. People like to draw parallels to help themselves better understand things that are complex and difficult to process. Remember, though, that this doesn’t mean they know MS. And in the beginning stages, you are just learning as well. It can be difficult to educate others when you’re still learning (and adapting) to your new life.
I always encourage my family and friends to do solid research that focuses on validated scientific studies or information from credible health organisations. I also share information on my symptoms and personal disease progression because I want them to really understand what I’m up against. I can’t control what they listen to or what rabbit hole Google leads them down, but at least I’ve done myself the service to share my truth.
The (unsolicited) advice
Just like everyone knows someone somewhere who has MS, they also happen to have some type of advice that can “help.” Sometimes, that advice might actually be useful; other times, not so much. This was one of my biggest pain points. When someone would send me “advice,” say an article about a new diet that has been “proven to cure” MS, I would take it personally.
My first thought would be: “You didn’t think I already saw this and tried it?” Or, “It’s not as easy as changing your diet. If only curing MS were that simple.” On my worst days I would wonder if they think that I’m being lazy and not pursuing new ways to manage my MS with all of my energy.
Over the years I’ve learned something extremely valuable in this area: When someone approaches me with advice, most of the time, it’s coming from a good place. Those folks are trying to empathise with me and are genuinely trying to be helpful. At the same time, I think a lot of that advice may also come from a place of fear. When you see someone you know — someone who seemed perfectly healthy and capable — suddenly struck by a chronic, progressive illness, you can’t help but think, “What if that happened to me?” It’s a scary thought.
And so they hope that something as “easy” as some of these different therapies or devices or diets do provide relief or maybe even a cure, because it calms their fears and personal anxiety.
Of course our loved ones want us to feel better and don’t want to see us suffer, but I do believe that for many, a lot of it comes from their own fear. With this in mind, I now approach these bits of “advice” with peace. I don’t take it personally, I thank them for sharing, and I tell them I love them. Sometimes I use it as a teachable moment to help them better understand MS. That’s all, no further thoughts or energy towards it.
“But you look so good!”
Sometimes, despite your best efforts at educating your community, there are still family members and friends who just don’t get it. “But you look so good!” is one of the most annoying things I hear from family and friends. Darn right, I do! MS is attacking my nervous system, not my babe status.
But seriously, what annoys me most about this statement is what’s not said. When you say “You look so good,” what you’re implying is, “You don’t look sick.” MS is, at times, an invisible illness. Sometimes it has visible symptoms (walking issues, mobility aids, tremors, spasticity, etc.), but for the most part, you can’t see what’s really going on. Just because we look good doesn’t mean we’re not struggling or not sick. Look into our eyes. You’ll see it there.
Changing the conversation is good to counter this type of chit-chat. For example, my dad — who is one of my biggest supporters and whose love for me knows no bounds — used to say this to me. On bad days, when I was bedridden, he would come home from work and come chat with me and tell me how frustrated he was for me that I wasn’t feeling well. Those conversations typically ended with, “But at least you look good.”
Eventually I asked him to not say this, and told him that it didn’t matter what I looked like, I felt like garbage. It was a good chat, and the next night when he came home, he followed the same routine except ended with, “Oh, and you look like garbage,” with a smile. Many years later, whether I’m having a terrible day or actually look beautiful, he will tell me, “You look like garbage” with a smile. It makes me laugh and melts my heart a bit, because I know he gets it.
There may be family and friends who would just rather not accept the fact that you have MS and that life looks different now. They (selfishly) may not be able to handle this level of discomfort or may not be understanding of how MS impacts you. As frustrating as this can be, it’s on them to learn how to adapt — you can’t spend the energy on helping them come to terms with your diagnosis.
It hurts when a close family member or friend acts this way. Sometimes you might need a little break from them, or distance, just to work it out personally. Over time, some people’s perceptions may change, but it’s not your job to do that work for them. The best thing you can do is just accept them where they are and invest time in them accordingly.
Other people in your family and friend circle might just become outright toxic — in their words, their intentions, and their lack of support. No matter what, remember that it’s OK to distance yourself from a toxic person. “Toxic” doesn’t necessarily mean that they’re a bad person. It just means that they aren’t bringing anything positive to the relationship.
This is where I learned a lot about quality over quantity, specifically with friends. Before MS I had a vast network of friends; coworkers, friends from college, neighbors, etc. When I was diagnosed, I saw that circle get smaller and smaller. Some of that was because I was becoming a different person with different goals. For example, instead of trying to reach the top of my career ladder, I was relearning to walk.
Another part of that was because the journey just got uncomfortable for some people, and many just didn’t like the new set up. I wasn’t bringing the same type of energy and enthusiasm to the table anymore. Some people couldn’t hang; others were outright negative. I started to realize who my true friends were and I took the little energy that I had and invested it in them. Quality over quantity.
Find the ones who “get it”
One of my favorite things that life has brought my way over the past six years is the community of others living with MS I’ve found on Instagram. They just get it — the good stuff and the bad stuff, no explanation needed. How do you find this type of community?
- Look through the hashtags #multiplesclerosis, #thisisms, and #mswarrior on Instagram.
- Search on Facebook for support groups.
- Check with your local MS chapter or an in-person support group.
There is nothing better than knowing you’re not alone, and finding your people who get it definitely will help.
Is there hope that you can have strong relationships with family and friends after being diagnosed with MS? 100%. Times two.
When I was diagnosed with MS, I moved back in with my parents and three of my youngest siblings were still at home. What could have been a bummer situation turned out to be one of my life’s most beautiful gifts. I got to spend serious quality time with these siblings and now we are best friends. Same with my parents — we are closer than ever.
The friends that I have now are the best friends a girl could ever want. They don’t treat me like I’m some sick person; they treat me like a friend. They love me for who I am, damaged myelin sheath and all.
My relationships with family and friends run strong. They are intentional, they are high quality, and they are beautiful. I would rather not have MS, but I know that this journey helped bring these relationships to these places. And for that, I am thankful.
UK/MED/18/0349 January 2019