September 23, 2022 | News | Living with MS

Your MS diagnosis: should you tell anyone?

Deciding whether or not you should reveal your MS diagnosis to family, friends and work colleagues is a stressful process. Will people think of you differently? Will MS wreck your relationships? Will an employer find an excuse to fire you or limit your career opportunities? Will people be supportive and encouraging, or will they make living with MS even more of a challenge?

These are not easy questions to answer. There is no right or wrong; the best approach will differ according to the person’s specific circumstances. But one group of researchers is trying to shed some light on this issue with two new studies.

The first surveyed 204 people using a questionnaire called DISCO-MS (for Diagnosis Disclosure and Concealment in MS survey) (Kever and colleagues. Mult Scler 2022;28:247-256). The survey found that about 25% of people did not disclose their diagnosis – most notably to employers. Related to this was the finding that 50% thought that revealing their diagnosis might have negative consequences on their professional or personal life.

The people who were more likely to conceal their diagnosis were younger, newly-diagnosed and with minimal disability – so people were earlier in the journey. It may be that they were still processing the fact of their diagnosis. Their symptoms were probably less apparent to others, so they weren’t forced to “explain” their symptoms. And their personal or professional lives were probably less secure, so talking about their diagnosis might be more likely to have negative consequences.

The second part of the study looked at the consequences of concealing an MS diagnosis (Kever and colleagues. Mult Scler 2022;28:1311-1314). The researchers found that concealing the diagnosis was related to worse loneliness and lower social support. This implies that not revealing the diagnosis leads to loneliness. Perhaps a better interpretation is that people without supportive friends and family members are less likely to talk about their diagnosis, which may be entirely appropriate given the circumstances. That sense of being cut off and isolated was only made worse during the pandemic.

This issue of whether or not to reveal your diagnosis is addressed in an MS Society of Canada booklet, Multiple Sclerosis: Its effects on you and those you love (available as a free download at https://mssociety.ca/library/document/k4Mu67YmgnraAwHKJIxtdh9UCiEOzpGy/original.pdf). It may also be helpful to reach out to local patient support groups or online communities for some needed support.

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