Exclusive Content

To Tell or Not to Tell Someone You have MS

By Matt Cavallo

There are many crossroads in life where you may find yourself wondering whether or not to tell someone that you have MS. Whether in personal relationships or at work, telling another person that you are diagnosed with a chronic, uncurable disease can alter the course of that relationship. 

Whether it is fair or not, some people form unconscious biases towards others who have a disease like MS. An unconscious bias is when discrimination and incorrect judgements occur because of stereotyping.  Even if people have good intentions for supporting you in your fight, their unconscious biases might negatively affect how they interact and treat you.

The decision to tell someone that you have MS is a personal decision. You are under no obligation to tell anyone that you are living with the disease. If you do share with someone, how you share it with them can make all the difference. If you are scared and emotional, it may spark the same reaction in them. If you have a plan and project positively, they may react the same, as well. You can never predict how a person will react, but here are some tips on who to tell and how to tell them that you have been diagnosed with MS.

Partner or future partner – MS can be hard on a relationship. Knowing when to tell your partner or future partner is important. If you see the relationship growing, then it is important to tell your partner early on. If they view MS as a barrier to the relationship growing then you know that isn’t the person for you. 

Parents, siblings and other family members – Telling your family members means that the word will spread like wildfire. Each family interaction from there on out will start with, “how are you? How is your MS. You look great!” For some MSers, these kind of family interactions can become unbearable. It is best to tell your family once you have a plan and have learned all you can. That way you can start by saying that you have MS, and while it is a chronic disease, you are on a treatment and believe that you can manage it. This puts you in a position of strength and can help with some of the emotional feedback that you might receive.

Children – Your children, no matter their age, want to know that you are alright. If they are young, they are not going to understand what MS is, but they can understand that you need to see the doctor and will need to take medicine to feel better.  If you are sad or upset, they will sense that. Try to keep the information that you share simple for them to understand.  For teenagers, they will want to know more details about the disease and your treatment plan if you have one.  Adult children will want to know how they can help or what they can do. Remember that your children look to you for guidance, so when you are vulnerable, they will feel vulnerable too.

Friends – Telling a friend can be challenging. I have told friends who have then slowly faded out of my life. I have told others, however, who, after telling them, then became more involved in my life. If a person is a casual acquaintance, there probably isn’t a strong reason to tell them.  Unless someone starts talking about something MS related, there is no need for me to tell them about my MS. If someone is a close friend or becoming a close friend and you have developed trust, it might be a good idea to share your diagnosis. If you find yourself avoiding a friend because of your MS, you should probably decide whether you want to confide in your friend and pursue your friendship on a deeper level.  Some people might misread your distance as not wanting to be friends as opposed to you just keeping your MS private.  At a certain point, however, that privacy can negatively affect a relationship.

Employer or coworker – Unless you need a reasonable accommodation at work, there isn't much incentive to tell an employer. I have had coworkers become jealous of me because I had to leave work early for infusions. You can let your coworkers in, but remember you are there to work, earn money, and get health insurance to help you treat your MS. If you do tell someone at work, the best person to tell is your immediate supervisor. Make sure that if and when you tell them that you focus on the positive and how well-managed your MS is on treatment. You don’t want MS to be a barrier to your professional growth and development, even if the intentions are good.