It’s entirely up to you if and when you want to tell others about your multiple sclerosis (MS) diagnosis.
Keep in mind that everyone may react differently to the news, so take a moment to think about how to approach your family members, friends, children, and coworkers.
This guide will help you understand who you should tell, how to tell them, and what you might expect from the process.
You should prepare for a wide range of reactions as you tell people about your new diagnosis. Consider the pros and cons of telling each person beforehand.
When you’re ready to tell them, try to avoid rushing the discussion. They may have a lot of questions, and it’s essential that they walk away from the conversation more informed about MS and what it means for you.
- You may feel like a huge weight has been lifted, and you’ll likely feel more in control.
- You can ask your friends and family for help now that they know what’s going on.
- You’ll have the opportunity to educate people about MS.
- Family and friends can be drawn more closely together upon learning about your MS diagnosis.
- Telling coworkers will help them understand why you may be tired or unable to work.
- People who may have an idea that something is wrong won’t have to guess. Telling them avoids having them make incorrect assumptions.
- Some people may not believe you or think you’re seeking attention.
- Some people may avoid you because they don’t know what to say.
- Some people will take it as an opportunity to provide unsolicited advice or to push unapproved or alternative therapies.
- People may now see you as fragile or weak and stop inviting you to things.
Close family members, including your parents, spouse, and siblings, may already think that something is wrong. It’s better to tell them sooner rather than later.
Keep in mind that they may be shocked and scared for you at first. It may take some time for them to process the new information. Don’t take silence as not caring. Once they get over the initial shock, your family will be there to support you through your new diagnosis.
If you have children, it can be difficult to predict how they’ll react to your diagnosis. For this reason, some parents choose to wait until their children are older and more mature to discuss the situation.
While the decision is up to you, it’s important to note that research suggests that children who have little information about their parents' MS diagnosis have lower emotional well-being than those who are well-informed.
In a recent study, researchers concluded that allowing doctors to discuss MS directly with the patient’s children helps to create a foundation for the entire family to cope with the situation.
Plus, when parents are well-informed about MS, it can cultivate an atmosphere in which children aren’t afraid to ask questions.
After you tell your children about your MS, the study’s authors recommend that your children continue to receive routine information from a healthcare provider about your diagnosis.
Parents are also encouraged to discuss MS with their children and to bring them to doctor’s appointments.
Keep S'myelin, a kid-friendly magazine from the National MS Society, is another good resource. It includes interactive games, stories, interviews, and activities on a variety of topics related to MS.
There’s no need to tell all your acquaintances in a mass text. Consider starting with your closest friends — the ones whom you trust the most.
Be prepared for a wide variety of reactions.
Most friends will be incredibly supportive and offer help right away. Others might turn away and need some time to process the new information. Try not to take this personally. Emphasize to them that you’re still the same person you were before your diagnosis.
You may also want to direct people to educational websites so they can learn more about how MS can affect you over time.
Disclosing an MS diagnosis in your workplace shouldn’t be a rash decision. It’s important to weigh the pros and cons of telling your employer before you take any action.
Many people with MS continue working for a long time despite their diagnosis, while others choose to leave work right away.
This depends on many factors, including your age, your occupation, and your job responsibilities. For example, people who drive passenger or transport vehicles may need to tell their employer sooner, especially if their symptoms will affect their safety and job performance.
Before you tell your employer about your diagnosis, research your rights under the Americans with Disabilities Act. There are legal employment protections in place to protect you from being let go or discriminated against because of a disability.
Some steps to take include:
- calling the ADA information line, operated by the Department of Justice, which provides information about ADA requirements
- learning about disability benefits from the Social Security Administration (SSA)
- understanding your rights through the U.S. Equal Employment Opportunity Commission (EEOC)
Once you understand your rights, you may not have to tell your employer right away unless you want to. If you’re currently experiencing a relapse, you may choose to first use your sick days or vacation days.
Disclosing your medical information to your employer is required in certain scenarios. For example, you need to let your employer know in order to take advantage of medical leave or accommodations under the Family and Medical Leave Act (FMLA) and the provisions of the Americans with Disabilities Act (ADA).
You only have to tell your employer that you have a medical condition and provide a doctor’s note stating so. You don’t have to specifically tell them that you have MS.
Still, full disclosure could be an opportunity to educate your employer about MS and may get you the support and assistance you need.
An MS diagnosis doesn’t have to be a topic of conversation on a first or even second date. However, keeping secrets doesn’t help when it comes to fostering strong relationships.
When things start to get serious, it’s important that you inform your new partner about your diagnosis. You may find that it brings you closer together.
Telling the people in your life about your MS diagnosis can be daunting. You may be worried about how your friends will react or nervous to reveal your diagnosis to your coworkers. What you say and when you tell people is up to you.
But ultimately, disclosing your diagnosis can help you inform others about MS and lead to stronger, supportive relationships with your loved ones.