Sharing My Multiple Sclerosis Diagnosis

A girl walks into a bar…

That may seem like a funny way to start an article discussing the implications of sharing a multiple sclerosis (MS) diagnosis, but that’s how I told my partner, Adam. It was our first night meeting and I just blurted it out. No warning. No explanation. Just, “I have MS.” I wanted to pull the bandaid off and get it out of the way. I fully expected a negative reaction, but there we were for the rest of the night, still talking and still laughing.

Now, nine years later, I can see that this could have gone so many different ways. He could have walked away. He could have pitied me. He could have used any excuse to run. He could have stuck around for the night and never called again. If I were him, I might have. He didn’t. The point of the story is that we shouldn’t always assume the outcome we fear will occur. Adam didn’t fear what the future may hold; he focused on being supportive and living in the now.

That’s not to say everyone will react positively to your diagnosis every time. This is not a one-size-fits-all formula. This is just a reflection of how I chose to disclose my MS to my partner. And it’s how I learned that, if someone does react negatively, I should be the one to walk away – not them.

Sharing your MS with your work colleagues, your children, your family, and your friends will vary for all of us. Some people choose not to disclose it at all and that is okay, too. It’s all about what feels right to you based on your needs and your experience.

Disclosing my MS diagnosis to my employer was not so heartwarming. This is a hard one to write about because it still makes me angry. I was sick. I was so sick for so long that it was impossible to hide it from my colleagues. I was down to 97 lbs, constantly shuffling to and from doctor’s appointments searching for answers. I knew I couldn’t continue to travel, go to meetings, or focus on anything other than the fight to stop deteriorating – but it was incredibly hard to absorb the fact that I may need to say goodbye to my career aspirations. I was fighting for my health, but also fighting to maintain a career I hoped to excel in. After I got my MS diagnosis, I wanted to go back to work, but the company and the physician certifying my long-term medical leave didn’t think I had it in me. Maybe I didn’t. I can’t go back in time and change things, but I do know that because of their decision, the rest of my life fell into place in a way I couldn’t have foreseen.

Now, 15 years later, I am grateful. I am grateful I was forced to focus on my health. We are all protected from discrimination but in reality, sometimes we just can’t do what is required for a specific job. I believe most employers want you to succeed and will make the necessary accommodations to ensure that you do. My advice here is to gauge your employer, be honest with yourself, and determine what level of insight you decide to give them. In the end, your health is what matters. There is no job more important than taking care of yourself.

I was diagnosed with MS before I became pregnant. I made a very conscious decision to be transparent with my son, Jack, from the moment I first held him. MS is a huge part of my life and who I am. I felt and still feel that keeping my MS from him would create a life full of secrets and lies. He deserves to know who his mom is. I don’t apologize for my MS. It is my burden to bear, not his. I truly believe he is proud of the human I am in spite of MS. Honesty, while it may not always be the easy route, is the right route for me.

I think it is important to give kids credit. Children are capable of understanding so much more than we perceive. I used to say, “Help Mama up,” when I was going from sitting to standing, even though I didn’t really need help. I wanted to prepare him for a day that may come. I was talking to a physician once about this and he stopped me. He told me to change the language from “Help Mama up” to “Let me see strong Jack.” That shifted things. I went from being a burden to him to empowering him.

It is hard to talk to our children about difficult topics (deaths, sick family members, pandemics, etc.) but we can’t hide what life throws our way. What we can do is prepare them to handle these obstacles. I wrote my book, Some Days: A Tale of Love, Ice Cream, and My Mom’s Chronic Illness, because I couldn’t find relatable materials to share with my son. It doesn’t make sense to me to focus on the details of the disease with him. What does make sense is to focus on how, regardless of the challenge, love is enough. Yes, we may miss a few events, but love is never ever in short supply. That’s what matters most.

Disclosing my MS to friends and family, like most others in my life, wasn’t a choice. I wasn’t the woman they had known, and they noticed. I was different. My limits were different. Even though they now know about my MS, I still try to prevent many in my circle from seeing its real impact on my life. I sometimes feel like a fraud because I hide how hard my days are. I’m not sure when that will change, but I can assure you that when I am outed about the effect of MS on my day to day, it will not be on my terms. I’d like to keep people on the sidelines cheering me on, not realizing all the grueling challenges this disease has inflicted upon me. I’d like to keep them and the world seeing me as just ‘Jules’ – not ‘Jules with MS.’

Part of me wants the reality of this disease to be recognized by everyone in my life – for them to understand why I can’t join them for that hike, run, party, or road trip. However, it is a lot to ask of them. I’ve found that when I am honest with someone, it’s typically not a one-time disclosure. Even if their intentions are good, their first instinct isn’t always going to be to accommodate me. Each time they forget about the obstacles I face, it feels like I need to ‘come out’ again, and each time I remind them, their reaction is often draped in pity. I feel like hiding the truth is less of a burden than the disappointment I feel when someone who is supposed to know about my limitations forgets about them.

I keep reminding myself that it is up to me and no one else to figure out if a place or activity will work for me. I can’t expect others to worry about bathrooms, staircases, and chairs. That’s on me and when I put it on someone else, I am often disappointed. They can’t understand it and they shouldn’t have to.

On the other hand, being honest with those in your life can be a gift – if it’s the right person. We all worry about how others will perceive our illness. We all wonder what the implications of honesty will be. The only real way to find out is to tell someone. Find comfort in knowing that in disclosing, you are also exposing. You will find out who your squad is. You will get the assistance and encouragement you need from the people who matter. There are people in my life who show up for me and my needs. Regardless of MS, we all deserve to be surrounded by loving and supportive people. Require the best. ‘Thinning the herd’ can only lead to deeper, more authentic relationships.