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Deciding When To Disclose Your MS To Others

Posted on March 25, 2021
Medically reviewed by
Amit M. Shelat, D.O.
Article written by
Mary K. Talbot

You’ve received a diagnosis of multiple sclerosis (MS). Perhaps it was yesterday or even last month, but now you’re wondering when the right time is to share the health news with others.

Nearly 45 percent of people in the United States have been diagnosed with chronic diseases. Although some of these illnesses may be invisible, know that every day, someone is getting a diagnosis just like you. A recent landmark study estimates that almost one million people in the U.S. share the diagnosis of MS.

Multiple sclerosis is a disease that affects your brain and spinal cord and might manifest in ways that can be confusing or concerning to loved ones or co-workers. If you’ve had your diagnosis for some time, you might also be removing yourself from situations where your symptoms might reveal themselves, or you might be disconnecting from others socially or emotionally. In some cases, revealing your diagnosis could help simplify things.

If and when you share medical information is an entirely personal decision, however. The National Multiple Sclerosis Society advises that before you share your diagnosis, you should:

  • Know your audience
  • Prepare what you want to share
  • Contemplate your motivation for disclosing this information and the response you hope to receive

Sharing With Your Personal Circle

It might help your health and personal relationships to find family members or a close friend to open up to about your medical condition. A significant benefit of sharing with your loved ones is that they may be able to help provide physical and emotional support. Perhaps you need encouragement to do your daily physical therapy or are having trouble with the side effects of medication. Friends and family who are educated about MS can provide help and encouragement. It can also be helpful for those you love to understand what you are going through and why you might have become distant or “off.”

The reactions you receive to your diagnosis can be as varied as your symptoms. Some people might be sad or upset. Others might feel angry or depressed. Others might feel compelled to go to scour the internet for more information and treatments. Keeping calm and sharing information can be helpful to both of you. Whether you have clinically isolated syndrome, relapsing-remitting MS, secondary progressive MS, or primary progressive MS, you may want to share some information about your condition.

Prepare yourself by looking for experienced advice and coming up with terms and metaphors that can help your friends and family understand your fatigue and other symptoms. Your health team will likely have pamphlets that you can share, or you can access the National MS Society’s Knowledge is Power brochure online. It provides a medical overview of the disease, resources to learn more, and proactive steps that you and loved ones can take together to a better future.

Sharing in New Intimate Relationships

Divulging your diagnosis to a new partner adds a layer of vulnerability to a budding relationship, so it’s not necessary to share your diagnosis on a first date or early conversation if you don’t feel comfortable. You can choose to get to know the person before you decide to open up completely.

While you may be able to hide your symptoms in the short term, having a partner who understands why you may be fatigued, have difficulty walking or sleeping, or experience sexual dysfunction is important for a long-term relationship.

Sharing Your Diagnosis at Work

MS can impact your ability to do your work. “I have expended all my energy levels getting a shower and dressed for work,” shared one MyMSTeam member.

If your experience is similar, you may be wondering about your options for telling your employer.

It’s likely a good idea to talk to human resources if you need reasonable accommodations to perform your work. Reasonable accommodations are guaranteed under the Americans With Disabilities Act of 1990 for employers with 15 or more workers. You may anticipate needing time off for doctor’s appointments or foresee that you need to cut back your hours to part-time work. Human resource officers are required to keep medical information confidential.

However, there may be long-term consequences in revealing your medical diagnosis. Know that co-workers, including your boss, are not legally obligated to keep the information confidential, and sharing your diagnosis may impact your promotion and workload. The National MS Society suggests that length of tenure, your relationship with your boss, and your job-performance record are all variables that should be factored in when considering speaking to your supervisor about your diagnosis.

Boundaries and Privacy

If you are finding it difficult to know whom to trust with your personal information or how to tell the people around you about your multiple sclerosis, your neurologist or a mental health counselor might be able to provide guidance. You might also find practical advice from others who have gone before you by participating in a support group or connecting with others on MyMSTeam.

In today’s environment of social media, it’s up to you to set boundaries and to let those you’ve disclosed your diagnosis to know if you’d like to keep your diagnosis confidential. You are the gatekeeper and decision maker, and only you will know if you want to share your diagnosis beyond your inner circle.

If you’ve told your friends, loved ones, and co-workers, recognize that you might be overwhelmed with the response. Timing your conversations before participating in a Walk MS event or a Bike MS ride might be appropriate because it’s an easy way to link to information digitally, and it provides a way to channel their concern. Donating or participating in an MS fundraiser is a positive way for people to support you and the entire multiple sclerosis community.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMySTeam, more than 165,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.

Who have you disclosed your MS to? How did you know it was the right time? Share your experience in the comments below, or start a conversation by posting on MyMSTeam.

All updates must be accompanied by text or a picture.
Amit M. Shelat, D.O. is a fellow of the American Academy of Neurology and the American College of Physicians. Review provided by VeriMed Healthcare Network. Learn more about him here.
Mary K. Talbot is a graduate of Providence College (Rhode Island) and the Medill School of Journalism at Northwestern University (Illinois). Learn more about her here.

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