If you rely on social media for staying connected, you’ll want to devise a special strategy for sharing (or not sharing) your health condition. And though there are laws to protect you on the job, it’s important to think through any decision to talk about MS at work.
MS affects each person differently, so what to say, who to say it to, and when to say it will vary, points out Rosalind Kalb, PhD, a clinical psychologist with the National MS Society, and co-author of Multiple Sclerosis for Dummies.
Kalb poses three questions to ask yourself, and to help you plan your communication strategy:
1. Why do I want this person to know?
2. What do I want them to understand?
3. What response am I hoping to get?
An MS diagnosis can be scary, as can a worsening of your symptoms. Kalb notes that all that fear can make you want to go to extremes — either telling everyone about your MS or telling no one at all. Using her questions can help you avoid the regret that might come from telling too many people too soon, or from keeping the news to yourself and feeling isolated from loved ones whose support would bolster you.
Talking About MS With Close Family and Friends
Kalb stresses that strong relationships require honesty. So even though you might be tempted to keep your diagnosis to yourself, or make up stories to explain away some of your symptoms, you just might have to be brave and share the news with those closest to you. “Start with your nuclear circle and work your way out,” Kalb advises when it comes to MS and friends.
There are good reasons to start close to home. Your loved ones are most likely to be the first to notice any changes in you, to help you if needed, and to be affected by the impact and costs for your care.
If you choose to tell those close to you about your MS, consider these talking points:
- What MS means for you. Some family members may have preconceived notions about the disease. Because MS affects everyone differently and treatments are changing all the time, you might have to educate them about your symptoms and about the treatments you have chosen. Be ready to answer questions about MS, and patiently correct misconceptions.
- What you need from them. Those closest to you will likely offer their help. Be prepared to suggest what you need when you’re telling them the news. Who is a good listener? Who can help with specific tasks? It’s a good idea to have a few answers to the question, “What can I do?”
- An opportunity to meet your doctor . Consider taking a close family member along to your doctor or another health professional. It may be comforting to have the company, and your doctor can help explain your symptoms and answer any questions.
- Respecting your privacy. “Tell people, ‘I’m in the process of telling others and I need to do this in my own time,’ ” advises Kalb. This is a gentle way to ask your loved ones to wait before they tell their own circle of friends and family.
Family and friends will offer to help with your MS, but they might also worry about how your diagnosis will affect your relationship. Think about these issues in advance so you can offer some suggestions to balance MS and friends/family situations. For example, if fatigue is keeping you from enjoying an afternoon of shopping with your girlfriends, plan a get-together for the time of day when you generally have enough energy or suggest a lazy afternoon at home with the girls.
Explaining MS to children can be challenging. Young children may be the easiest age group because they are naturally curious and the least judgmental, but they’re also sometimes the most self-focused. The National Multiple Sclerosis Society has a newsletter (“Keep Smyelin”) that’s designed for children and contains information to help parents talk about MS. Older children and teens can be difficult to talk to about anything, says Kalb, but it’s crucial to keep the lines of communication open. Sharing a resource such as Multiple Sclerosis for Dummies may help young people. “Teens can read it, think about questions, and check out the resources online themselves,” she says.
Talking About MS With a Romantic Partner
Talking to friends about your MS is one thing. But an MS discussion with a sexual partner is something else. Sharing a multiple sclerosis diagnosis with a current or potential romantic partner is most likely going to be a challenging conversation. If you’re just starting to get to know someone, Kalb says it’s not necessary to share your health condition on the first date or even the second. But when you begin to feel like it’s a relationship worth investing in, let your potential partner know about your MS.
Kalb suggests thinking about when you’d want to know if the tables were turned. It’s true that some people will decide against continuing with the relationship, but others won’t be deterred and will continue to want to see you.
If you’re already in a relationship, how it can weather MS may depend on how long you’ve been involved, says Kalb. Established relationships that have already overcome stressful situations should be able to survive the news and the implications of chronic illness, but younger relationships are more likely to fall apart.
One of the difficulties in the early stages of MS is that doctors don’t know how the disease will progress, or who is going to eventually become severely disabled. And although more and more medications are available to help control the progression of the disease, many of them have side effects that can also be unpredictable. You’re asking your partner to go with you on an unknown journey.
Talking About MS Online
You might be tempted to post on Facebook or start a blog about your experiences. Many people find useful support networks online, but it’s important to know that posting online is “like writing on the side of a barn with permanent marker,” says Kalb. That post or tweet or blog comment could be around forever — and it’s accessible to future employers and others whom you might prefer to tell in your own time, if at all.
If you want an online support network that gives you some privacy and confidentiality, try the Everyday Health communities or support groups created by the National Multiple Sclerosis Society.
Talking about MS and sharing your experiences will help you build a support network and get solutions to problems that are part of living with MS. But keep in mind that it’s important to be thoughtful about how you share your news.