"I have multiple sclerosis."
I've shared this news with family, colleagues, and friends – old and new – many times over the years. Sometimes I have been awkward and clumsy in my approach. Sometimes I've been embarrassed or feel guilty that I haven't shared the news sooner. Sometimes I've worried about the response.
In the weeks after my diagnosis, I revealed my status as "MS patient" to relatives, close friends, and my co-workers at the clinic where I worked. I set up a meeting with my boss and told her face-to-face. Keeping my diagnosis secret, I thought, would be more stressful and difficult than being open about it.
And… my little community rallied, offering playdates for my kids, delivering meals, sending cards and emails of support.
But unfortunately, this open approach won't work for everyone. I don't think MS carries the stigma it once did, but misinformation is still prevalent. Over the years, I have been more cautious about my revealing my diagnosis, though I've generally found that others respond well when I decide it's time to share.
Here are some tips I'd like to pass along:
1) There is not a one-size-fits-all approach to revealing an MS diagnosis. Take your time and strategize. Telling my parents was different from telling my kids, though they all needed reassurance I would be OK. My boss needed to know that I felt confident I could return to work – and I didn't burst in and tell her the first day but took some time to process and plan. I find it helpful to think about who I am telling and their likely reaction ahead of time, and then I consider the best approach to address their concerns.
2) Be prepared to educate your audience about MS. In my experience, most people have heard of MS, but few know much about it. They may think: "It's some kind of brain disease." Or, "It causes people to need a wheelchair." But that may be the extent of their knowledge. Few will know, for example, that we now have over 15 different medications that slow progression of MS, that while it can be debilitating, many people with MS live normal lives and are able to work, travel, and function like anyone else. You can refer people to the National MS Society for more information if they are interested.
3) Be proactive: Share your feelings and symptoms, but also share your plan for getting treatment. If you are starting from a place of complete hopelessness, the person hearing your news may be overwhelmed and discouraged from offering help. If you don't have a plan yet, it's OK to say, "I am so mad this happened to me, and I don't know what's going to happen next, but I'm going to figure it out."
4) Beware of the "fixers." Some people will offer unsolicited advice and flood you with get-well strategies. A co-worker brought me a book about restrictive MS diets days after my diagnosis. It was a thoughtful gesture, but I wasn't ready to radically alter my diet while adjusting to the news myself. A good friend with MS was offered essential oils to cure her – a well-intentioned, but misguided suggestion. While I appreciate the concern that these problem-solvers bring to the conversation, most of the time I find the best approach is to thank them and tell them I will discuss their suggestions with my doctor.
5) Ask for what you need. People want to help, but many don't know how. Tell them how to lessen your burden: do you need help with housework, childcare, grocery shopping, transportation? If so, ask and be specific. If you don't need extra help, you can always say "Thanks for listening. That's all I need from you right now," letting the person know that nothing more is expected at the moment.
If you feel that you can't share your news openly, at least tell someone. Don't go through your MS journey alone. The National MS Society offers support services and MS navigators who can provide guidance and advice.
Please share your stories and more tips in the Comments section below.
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