There's no easy way to share a diagnosis of Multiple Sclerosis (MS), says Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society. She points out that MS can affect everyone differently and most families have their own unique communication and coping styles, which means that you'll need to tailor your conversation to your specific situation.
Things to Consider
Here are some of the key factors Kalb says you'll need to keep in mind:
- "People need to know that this is a chronic illness with no known cure. It causes damage in the central nervous system in a random fashion, which means that the symptoms and disease course are highly variable," Kalb says. It's also important to educate people that the symptoms can be mild or severe, ranging from numbness or tingling in the limbs to extreme fatigue, changes in bladder and bowel control, pain, difficulty walking, and paralysis. MS can also cause issues with memory and concentration, and an increased tendency toward depression. However, with such a wide range of MS symptoms possible, she recommends starting by saying, "MS can cause a lot of different symptoms and I don't yet know what all of mine will be, so I will keep you posted," she says.
- You should also remind people that MS can vary over the course of a day and from week to week. Attacks (also called "relapses") can severely limit your abilities and activities for days or weeks at a time, while you may feel like your old self during periods of remission. "This variability can be confusing to family and friends, since they won't know what to expect. Unpredictability is one of the most challenging things about MS for everyone," she says.
- To deal with all of these challenges, it's important to learn how to communicate effectively. You'll need to tactfully let people know you can manage on your own when you're feeling fine, and you also need to be able to ask for their help when you're having a bad day.
- Share age-appropriate information if you have children. The information you provide will help them understand what's going on. Give them the opportunity to ask any questions they may have.
Make Your Disclosure Decisions Carefully
In the early stages of your diagnosis, Kalb says that it may be a good idea to limit how many people you tell until you have a chance to process the news yourself. But everyone is different and some people may find it cathartic to talk about the illness, so you need to do what works best for you.
However, there is one caveat to this. You should probably wait to share this information at work unless you need to request an accommodation. It's important to research your options thoroughly since the diagnosis of a chronic illness can affect your career. "Don't rush out and tell colleagues because you can't take it back once it's out there," Kalb explains.
She says the same is true about disclosing such personal information on Facebook and other forms of social media. "Once you do it, it's there for all of the world to see."
A Final Note
Finally, Kalb explains that when you do share your MS diagnosis with loved ones, you may find yourself needing to comfort and reassure them that you are OK and getting good care.
This can feel challenging, especially if you were expecting for them to be comforting you. The best way to handle this is by being prepared.
Kalb suggests going to the National MS Society's website. There you'll find a wealth of information about MS to share with your loved ones. Kalb has written a learn-at-home series called Knowledge is Power that's available for free through the Society's website. To receive new topics each week via email or mail, you can register for this program online or call 1-800-344-4867.
Rosalind Kalb, PhD, reviewed this article.
Source:
Rosalind Kalb, PhD, Vice President of Clinical Care at the National MS Society. Phone interview Aug. 5, 2013.
http://www.nationalmssociety.org
