It can be a struggle to communicate with others about multiple sclerosis (MS) for many reasons. Friends and family members may not understand the chronic nature of MS or its unpredictable pattern of good days and bad days. They may judge, leaving people with MS feeling alone and unsupported.
Many members of MyMSTeam report losing friends due to this lack of understanding. “People don’t understand because they can't physically see how you’re affected by MS,” wrote one member. “That’s frustrating because they have no clue how lots of people with MS secretly suffer.”
On MyMSTeam, people living with MS vent to each other about these experiences and offer tips on how to cope. Here’s a selection of their advice on how to improve communication and stay positive.
“To have the job of educating my family and friends seems like a daunting task,” wrote one member of MyMSTeam. “Isn’t there a pamphlet to hand out or something?” Another member wrote, “I really don’t like the idea that I have to educate them. Can’t they just Google MS?”
Unfortunately, there’s a lot of misinformation out there. If you can recommend a trusted website, or even send a link to a specific article that outlines the most important information about MS, you can help them get the facts right. But if you prefer having a pamphlet to hand out, the National Multiple Sclerosis Society has created several pamphlets (including one titled “But You Look So Good!”) that you can print out and give to friends.
There are a number of comparisons and analogies that MyMSTeam members have found useful to explain to friends how MS symptoms like fatigue affect them. The Spoon Theory is a popular analogy. The idea is that every person has a handful of spoons, and each spoon represents a unit of energy. Healthy people have many spoons to use up each day, but someone with a chronic illness might only have a few spoons’ worth of energy to get through their daily tasks. They’ll need to decide which activities to spend their spoons on — getting dressed, washing the dishes, cooking a meal, playing with their children — before they become too fatigued. During MS flares, a task that would normally only use up one spoon might take several to complete, leaving less spoons for anything else.
Finding a common or shared experience to compare with MS is another good technique. “Tell them to remember their worst flu. Multiply that fatigue by 10,” recommended one member. Depending on what symptom of MS you’re trying to convey and who you’re talking to, you might choose a different comparison.
Find out more about the Spoon Theory and other techniques for talking with family and friends about fatigue.
As an alternative to trying to educate people, take the pressure off yourself by choosing when and how you talk about your MS. It’s up to you when and if to share your MS diagnosis, who you tell, and how much you reveal.
“I told my best friends like a year later after my diagnosis because I was trying to wrap my head around how I was going to manage this new chapter with MS,” one member of MyMSTeam wrote. “I wanted to learn how to live with it before having to explain to them.”
“I don’t let anyone know about the details of my MS unless it’s a major issue,” shared another member. “I figure they won’t understand, and everyone has a ‘fix-it.’ It puts me in a happy place not trying to prove myself.”
Some members explain that they’d rather spend precious time with family and friends focusing on topics they enjoy. “I’d prefer to talk about anything other than MS with family and friends, since I don't see them too often,” said one. Another wrote, “I just would rather enjoy my friends’ and family’s time with me and have a good laugh or two.”
A lot of MyMSTeam members describe losing friends after being diagnosed with MS. These stories are sad but common — friends who didn’t believe they had a disease, who judged or blamed them for their illness, or just didn’t have time for them anymore. “Seems like as soon as I started telling people what was wrong with me, they stopped contacting me as much, or at all,” shared one member. “Because I slowed down significantly, no matter how hard I worked at ‘normal,’ I started losing friends,” wrote another.
The bright side, some members say, is finding out which friends are willing to stay, learn about MS, listen, and be supportive. “Those who are not supportive, say goodbye,” wrote one member. “And those who stay with you are deserving and should be honored to know you no matter what.”
It can be a surprise to find out who’s really there for you. “I evaluate the company I keep to protect myself, but I find arrogance and ignorance can come from the people you least expect, and you get more support from people you barely know.”
Try to stay focused on the friends who stay, and not those who, for whatever reason, can’t be supportive.
It can be painful to talk about MS with friends only to receive judgment and ill-informed advice. MyMSTeam members often advise one another to work on putting less value on what others think, when those friends don’t understand life with MS.
“Let them think whatever they like!” wrote one member. “My life is not a popularity contest.” Another summed up, “Most people mean well, but those who don’t can take a hike! And even if we can’t say it to their faces, we can bitch about it or laugh about it here, and somehow or another, that makes it OK.”
Keeping a sense of humor is a popular theme. A MyMSTeam member wrote, “I don’t think any of us can ever really laugh it off. But we laugh at ourselves. We laugh at the world. We laugh to just be ourselves. MS isn’t something to wear with pride or shame, it’s merely a medical condition. You can read as much as you can and try to improve yourself and your attitude, or let life happen to you. It’s always your choice.”
Members of MyMSTeam often talk about how much they value making friends with others who have MS and understand it. Whether it’s through friends or family, on MyMSTeam, or in an in-person support group, meeting other people living with MS can be good for your mental health and a powerful source of support.
“These types of forums are great to find others that understand and make new friends,” recommended a member. “I have many new understanding friends that I’ve found here. Another suggestion is to volunteer with any organization you can, however you can. It’s amazing how many great people exist in these communities. They just care about people and don’t judge. Good luck, and know that there are still good people in the world.”
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 198,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Have your friends been understanding about how MS affects you? Have you found ways to talk about MS that really get through to others? Share your experience in the comments below, or start a conversation by posting on your Activities page.