Being diagnosed with MS or being told your loved one is diagnosed is like being told a secret. You can keep the information to yourself or share it with everyone you meet. Neither of these are good long-term solutions to help you live a quality life. You’ll need time to decide who you want to tell, who you don’t want to tell and how much information you want to share with people.
Everyone approaches this in his or her way and time frame. Sharing your diagnosis or your loved one’s diagnosis with close family members and friends is often the first step to learning how to talk about MS. Family members and friends will hopefully response with love and support.
Family members and friends respond in a variety of ways–some helpful and some not helpful. We cope with this information differently. Some of us spend days in the library or on the Internet reading about MS and others deny the diagnosis by pretending everything is okay. Others become overly emotional or stoic and unfeeling. At this point, what should you do?
1. Educate yourself. Become educated about MS so you can teach others about its known effects on you and others around you. This doesn’t mean knowing every fact about MS. Instead, learn enough to explain it to yourself and others. Discuss your feelings with those in your family who are willing to listen. Eventually, most family members and friends will be able to talk about their feelings in more educated and comfortable ways.
Stay current on your MS information to keep others informed and correct misinformation. Your family members and friends aren’t mind readers. Your willingness to share your feelings is important in building your network of support through current relationships and new ones.
2. Educate others. People respond to your MS or your loved one’s MS differently. Someone always has an Aunt Martha who has MS and is bedridden. Someone else knows someone who beat it and is normal now. Everyone seems to know the magic cure, vitamin, diet or exercise for MS. It’s difficult to deal with these responses. But it’s also a great opportunity to educate these people. Respond by thanking them for their concern. Tell them you’ll discuss their ideas with your health-care provider or your loved one’s health-care provider.
Many people with MS and their family members report that their group of friends shrinks after the diagnosis. Some family members and friends become distant because they don’t know what to say or do to help you and your family. Others are uneducated about MS. Others misperceive MS. The more you know, the more you can teach others. Live by example.
3. Respond to questions politely and openly. The invisibility and variability of MS symptoms makes it difficult to know how to respond to a question like “How are you?” If it’s a polite question, respond politely with “Fine, thank you.” If it’s someone who needs and wants to know, tell them. Learn to share your needs and feelings with your loved ones without always being asked or volunteering information.
4. Talk to your children. When there are children in the family, you might choose to tell them what seems appropriate for their age. As they get older or as symptoms become more visible, you’ll choose to talk to them more about MS and its effects on you and your family. Most children, if not told anything, will sense something is wrong, which may be more difficult for them cope with than the truth.
5. Talk to your health-care provider. Talking to your health-care provider or your loved one’s health-care provider is important. Go to appointments prepared and organized. Make the most of the short time with your health-care providers by reporting symptoms and asking questions. Remember that your health-care provider isn’t a mind reader. Share information with him/her so they can help you improve your health and well-being.
Other things to consider specifically for people with MS
1. You’re under no obligation to share your diagnosis with your employer.
Not all employers view MS negatively. If you don’t reveal your diagnosis, however, you can’t ask for accommodations under the Americans with Disabilities Act or ADA. If your job performance declines because of your MS symptoms and your employer is unaware of your MS, you may be at risk of being terminated or demoted for poor job performance. Only you can decide when or if to disclose your diagnosis. If you disclose your diagnosis, educating your employer and co-workers will help you communicate more effectively. Consider seeking legal advice before disclosing.
2. If dating, how do you share your diagnosis and when should you share it? There’s no absolute answer. Many people wait until a relationship is beginning to blossom until they share their diagnosis. If you have visible symptoms, you don’t need to explain your symptoms. You may choose to explain them in different ways. When you choose to share your diagnosis, understand that not all people will respond positively at first or ever. Many people will understand, respond positively and support you.