Remember when you were diagnosed with multiple sclerosis (MS)? If you were like me, you were confused. What did it mean? What will happen to me now? What do I need to change?
If MS is that confusing to the person who has it, imagine what it’s like for people who have no experience or knowledge about it. That group includes our family members, friends, co-workers, and employers. How do we tell them about MS and what it means to us?
I’ve spent a long time learning this. I tell people about MS a lot; I’m doing it right now. But at first, I had no clue.
The first people I needed to tell were my children, aged 10 and 8. I was a nurse and had read a book on MS, but what did I want them to know? I went by the rule, “Don’t tell them everything you know. Tell them what they need to know.” So, I told them, “Not much will change. I might be doing things a little slower and resting more often, but I’m still your dad.”
Loved ones usually want to know a few things: How will MS affect our relationship? What things won’t you be able to do for me anymore? What can I do for you? How can I help?
Be honest with them. Don’t pretend you can do more than you really can. Knowing how you really feel helps them plan their lives.
Communicating with family about MS isn’t a one-time thing. We have to be able to tell people how we’re doing on any given day, including talking about our fatigue level and our emotional state. Many MS families find that MS has brought them closer together. It makes everyone more honest, if they’re willing to be.
Friends and Neighbors
We usually don’t need to be as revealing with acquaintances and casual friends as with family. Some may be really concerned and willing to help. Others are just nosy and looking for some drama. But if they can see something is wrong with us, we usually have to say something.
It might help to educate yourself so you can explain it better, if you want to. Read some books or some websites.
Some one-liners that work for me in answering MS questions from those who are sincerely interested:
- What is MS? “It’s a disease of the nerves.”
- What does it do to you? “Nerves are important in every part of the body, so it affects each person differently. For me …” Again, if you want to share, describe your symptoms briefly.
- Can we still be friends like before? “I have good days and bad days. If I can’t do something with you one day, don’t forget about me. On another day, I’ll be good to go.”
- What’s going to happen to you? What’s the prognosis? “I don’t know. Everyone’s different. But I’m doing the best I can to keep going.”
- What can I do to help? Think about this one. Usually, they really want to help and might be able to if you can give specific asks. But sometimes, the best answer is, “Just be a friend.”
If they bring up topics you’re not comfortable talking about -- maybe your drug therapy or your sex life -- it’s OK to say, “I don’t want to talk about that now. I have (doctors or counselors) for that.”
Same thing when people think they know more about your condition than you do and give you all kinds of advice. It makes them feel good about themselves. You can avoid those conversations completely by saying, “I already have a doctor I trust.” Or if they talk about something they found online, you can listen politely, or you can do what I do, say “Just send me a link. I’ll look at it when I have time.”
Employers and Work Colleagues
Work is a different situation. Telling your employer you have MS can affect your job security and your career. The MS Society says, “Before disclosing your MS in the workplace, learn about your rights under the Americans with Disabilities Act (ADA), and think carefully through the pros and cons of sharing this personal information.”
Personally, once I had a sit-down job as an advice nurse, MS didn’t interfere with my ability to do my job. But it was obvious to my co-workers and supervisors that there was something different about me, like walking with a cane or taking 15-minute naps on break time. After a while, I found it more comfortable to disclose my MS to co-workers, after I had shown I was a good, reliable worker.
If I had needed accommodations to work, such as shorter shifts or special equipment, I would have had to reveal my MS to the employer sooner, taking the risk that they might try to fire me. I could have fought that, but it’s something to think about, especially if you work for a small company not covered by the ADA.
A Few More Ideas for Explaining MS
If we feel we have a good handle on MS, we can explain the science ourselves. If we’re not confident in our knowledge, we can give them printed materials from our neurologist or the MS Society. We can give them a link to a website we trust. Close family might benefit from accompanying us to a doctor’s appointment. Anyone could learn a lot from coming to an MS support group with us. For one thing, they’ll see that it’s a real problem, not just us acting weird.
Some important things for people to know:
- Every case is different.
- MS is not fatal, and it’s not contagious. They don’t have to be scared of you.
- Even the same case is different at different times. There will be good and bad days, weeks, or months.
- MS can affect us emotionally. They might notice us crying or laughing more.
- You might ask them to pay attention to you and let you know if they see any changes. They might pick up depression that we haven’t admitted to ourselves.
Realize you can’t predict a friend or loved one’s reaction when you tell them you have MS. They may be shocked; they may not believe you. (“But you look so good!”) They might break down; they might freak out. Instead of them comforting you, you might wind up having to comfort them. But it’s worth it. Learning to communicate about MS is just another hurdle we can overcome to live well with our chronic illness.
The MS Society has good pages on talking to your employer and your family and friends.
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
Photo Credit: Istetiana / Moment via Getty Images
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