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Disclosing an MS Diagnosis: How, when, and to who?

Reviewed by: Benjamin Ehrenfeld, LMSW
Written by: Abbi Havens

Most of us can empathize with (or directly relate to) the stress caused by receiving a diagnosis, but what we often don’t think about is the daunting task that follows patients out of the clinic: disclosing their diagnosis to friends, family, and coworkers. There is no how-to guide for revealing a diagnosis. Every relationship is unique, which makes determining when, how, and to who to share your diagnosis incredibly challenging. For MS patients specifically, a diagnosis has the potential to greatly impact the lives of those around you. Consider the following tips when determining how to share your diagnosis with your kids, romantic partners, and place of employment.

Talking to Your Kids About an MS Diagnosis

Recently in an emotional interview with Robin Roberts on ABC News, Actress Selma Blair opened up about her MS diagnosis and sharing the news with her 7 year-old son.

“Ever since my son was born, I was in an MS flareup and I didn’t know it.” Blair describes reaching a point of such severe fatigue that she would drop her son off at school and pull over a mile later to nap before she could drive home. When asked if it was difficult to share the news with her son once diagnosed, Blair said not at all.

“He had already seen that I was falling and doing things differently, so I did have to tell him after the MRI’s that I have something called Multiple Sclerosis. He almost cried and said, ‘Will it kill you?’ I said no, we never know what will kill us Arthur, but this is not the doctor telling me I’m dying. And he said ‘Oh, okay, and that was it,” Blair says with a chuckle.

Of course, not everyone’s experience disclosing their diagnosis to their children will go exactly as Blair’s did. However, it’s quite likely that your children notice differences in your behavior. Begin the conversation by asking your children what they’ve noticed. Explain what else they may see in the future, and that this is because you have something called multiple sclerosis. Additional tips for discussing MS with your child include:

  • Involve another trusted adult. Alone time with an adult your child trusts, like a parent or close family friend, will allow the child to ask questions they may not feel comfortable asking you at this time.
  • Include your child in household adjustments. With MS, it’s likely you may need to delegate household tasks that once fell on your plate. Give your child some new (manageable) responsibilities so they feel included and helpful.
  • Involve a professional if needed. Be on the lookout for indications your child may benefit from counseling, including changes in appetite, loss of interest in hobbies, poor performance in school, and trouble sleeping.

Telling Your Romantic Partner You Have MS

Telling a romantic partner (or potential romantic partner) you have MS is a major source of anxiety for those who are diagnosed because MS can affect intimacy in relationships. Determining when and how to share this information with a date is incredibly personal. It’s important to keep in mind the impact of the information you choose to share, both for yourself and for the other person. A rule of thumb is to think about what point in a relationship you would want to learn such a piece of information about the other person and use this as a reference in your own relationship. Always remember that you are never obligated to disclose your diagnosis to anyone who makes you feel uncomfortable.

Thoughtful Disclosure at Work

When, how, and to who you disclose an MS diagnosis at work are difficult decisions to make, and there is no right answer for everyone. Only you know your boss, how empathetic they are to their direct reports, how accommodating they are, and how likely they are to keep promises and respect your privacy. If you have reservations about sharing your diagnosis with your supervisor, begin with your HR department. HR managers are required to keep your disability disclosure confidential and are trained in accommodating disabilities in the workplace.

Although not required, it’s recommended that you inform your supervisor of your diagnosis before you require modifications at work. Have a discussion with your care provider about modifications they anticipate you will need in the workplace and be ready to discuss them. Modifications might include:

  • Delegating tasks and responsibilities
  • Adjustments to your work schedule and the option to work remotely
  • Adaptive technology (typing aids, specialized keyboards, smart pen, digital recorder, lift chairs, etc.)
  • Adjustments to your physical workspace (proximity to the bathroom, wheelchair ramps, space in-between desks and tables, etc.)

Whether you should disclose your diagnosis to your peers depends on your personal and work-related relationships with coworkers, as well as your specific symptoms. Will your communication or mobility be affected? Will you be absent when coworkers expect you to be present? Will you be unable to perform tasks your coworkers expect you to perform? If this is the case, and you are not concerned about mistreatment by coworkers, consider disclosing your diagnosis. You do not have to reveal an MS diagnosis specifically. It’s perfectly acceptable to explain your symptoms with a simple “changes to my health.”

Know Your Workplace Rights

If these discussions don’t go as planned (and even if they do), it’s important to know your rights as a person with MS in the workplace. The Americans with Disabilities Act (ADA) was passed in 1990 to protect those with disabilities from discrimination and mistreatment. The ADA applies to workplaces with at least 15 employees, protects people with disabilities from discrimination during hiring, promotion, or dismissal, and empowers you to request appropriate modifications. Keep a record of all correspondences you have in the workplace regarding your diagnosis including meeting notes, emails, promises made to you, and information disclosed. For more information about your rights in the workplace, read the full Americans with Disabilities Act.

Who do you have to tell?

Many people diagnosed with MS don’t know that if you drive, you must inform the DVLA (Driver and Vehicle Licensing Agency) of your diagnosis because MS qualifies as a “notifiable condition.” They will mail you a form and may request an assessment from your doctor. You will either retain your full license or will be provided with a one, two, or three-year license and reassessed once it expires.

You must inform your insurance providers including health, life, and motor insurance. However, you may not be required to inform them immediately. Review your contract to determine if you need to disclose your diagnosis immediately or when you renew your policy.

In most cases, you are not required to share your diagnosis with your employer. However, some employers including the armed forces do require you to disclose your diagnosis right away. Review your contract to determine when and if you are required to inform your employer of your MS diagnosis. Additionally, one circumstance where disclosure of symptoms (though not diagnosis) is when applying for FMLA (Family and Medical Leave Act). That said, a diagnosis would be required when applying for short or long-term disability. In both FMLA and disability (short and long term) leave, a provider must fill out documentation supporting the request. With FMLA, symptoms can be discussed without divulging a diagnosis. With disability, a diagnosis is a required component.

Excluding circumstances that require you to share your diagnosis by law (which are few and far between) always remember that when, how, and to who you choose to disclose an MS diagnosis is your decision, and no one else’s. Do what feels right for you and your family and listen to yourself, because there is no one way to get it right. If you or a loved one are experiencing symptoms of MS or need a care team to help manage your MS, speak with your primary care physician about a referral to the UT Health Austin Multiple Sclerosis and Neuroimaging Center. As part of the care team at UT Health Austin, we offer mental and behavioral health services for patients and their families if needed.

About UT Health Austin

UT Health Austin, the group practice designed and managed by the faculty and staff of the Dell Medical School, focuses the expertise of a team of experienced medical professionals to deliver personalized, whole-person care of uncompromising quality. Our experienced healthcare professionals treat each patient as an individual, with unique circumstances, priorities and beliefs. Working with you, your care team creates an individualized care plan to help you reach the goals that matter most to you — in the care room, and beyond. For more information, call us at 1-833-UT-CARES or request an appointment here.