Talking about MS isn't easy. But it can be helpful.
For many people with relapsing multiple sclerosis (MS), the decision of whether or not to tell someone about their disease can be nerve-racking. They may not want to tell friends or family about their illness for fear of being misunderstood — or being thought of as different, a burden, or an object of pity.
Avoiding or disguising the truth about MS usually causes more problems than it solves. It can distance you from friends and alienate you from family members. In trying to hide your MS, you can actually hurt yourself by placing added stress on your life as you avoid sharing the reality of your disease.
Telling the truth about your MS may give you the opportunity to deepen relationships with both family and friends, and to gain their support. Supportive friends and family members are valuable allies who won't let you withdraw or give up. At the same time, they won't push too hard in situations where pain, fatigue, or other problems are overwhelming. Support can come from anyone. Even children as young as 4 or 5 years old can be told in a way that won't frighten them.
Discussing your MS with a romantic partner can be somewhat trickier to handle. You don't need to tell every person you date. But you should share with the person if your relationship is progressing toward intimacy.
Even though talking about your MS is usually helpful, you may not want to share it with certain people right away. That's perfectly normal. Your privacy is valuable, and you shouldn't feel obligated to talk about your MS if you don't want to.
For guidance in talking to others about your MS, you may benefit from the advice of someone who's been there before. Consider talking to a TYSABRI ActiveVoices™ mentor. They're available to help you with issues like talking about your disease, plus much more.
How to tell someone about your MS
Regardless of whom you decide to tell, here are a few important things to consider:
- Share all the facts with the person you're telling — just saying that you have MS probably won't explain enough. Help them understand that your MS is unique to you.
- Tailor the facts to your audience. You'll need to talk differently to a child than you would to a peer.
- Understand that discussing your MS with ease will take time and practice. Don't be afraid to write down your thoughts before you talk about it. As your confidence increases, you'll be able to speak more openly and without apology.
- Don't expect the person you tell to understand everything all at once — remember how long it took you to accept your MS. Think of this as the beginning of a longer and deeper discussion that will hopefully help both of you grow.
Keep in mind that different people will react to the news of your MS in different ways. Keeping your tone calm and reassuring during your conversation can help put the person you're telling at ease. After you explain your MS to them, be sure to observe their reaction. This will give you a better understanding of how to talk to that person, or others, about your illness in the future.
Discussing MS at work
Telling family, friends, or even a romantic partner that you have MS is one thing. Talking about your MS at work is another. You may feel uncomfortable doing so, but if you need special accommodations — such as special equipment or access to the handicapped restroom — you'll have to notify your employer about your MS.
Given the consequences that can come with sharing your MS at work, you'll need to prepare carefully before you tell your employer. Get facts about the Americans With Disabilities Act (ADA), and learn what kinds of accommodations have worked well for others with MS. Contact your local National MS Society office for more help preparing for the discussion with your employer. And find out which of your state's government agencies and healthcare facilities offer vocational rehabilitation and evaluation services that can help you find the right job or help you keep an existing one.
Regardless of how you approach telling your employer, avoid quitting your job right away. While some people with MS may find working to be too stressful, others may find it to be fulfilling. Carefully consider your options before making any decision. And remember, people with MS can be just as successful in the workplace as anyone else.
Source: The ideas and suggestions were based on information from the National Multiple Sclerosis Society. They are general tips and suggestions and are not tailored to the specific needs of any 1 patient. This information is not intended to provide medical advice or to serve as a substitute for consultations with your healthcare professional.