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Being diagnosed with multiple sclerosis is a life-altering event. You find yourself in a state of shock with more questions than you have answers. During this time, you are also stressed about how your MS diagnosis will affect your relationships. How do you tell your partner? What about your family and friends? If and how you should tell your employer? These are all common thoughts that can cause extra stress and worry while still processing a MS diagnosis. 

We often put the thoughts and feelings of others ahead of our own. That can cause us to worry about how our diagnosis will affect them. We also may feel the need to be strong and put on a brave face for others. I know that was certainly the case for me. 

My diagnosis was very public. I was at work, and I couldn’t feel my legs. I let my coworker know that there was something wrong and word quickly spread around my office. Out of concern, I was sent home but because the symptoms flared in the office, there was now concern amongst my coworkers about my personal health situation. At that point, there was no hiding that something was going on with my health, and like it or not, I was going to have to talk to people about what happened. I decided to lean into it and embrace the fact that my MS was a topic of conversation. Even though my initial diagnosis was very public at the time, there would be many, many times after that when I met new people or started a new job and had to decide what if anything I should share about my MS.  

Here are some of the lessons I learned over the years about telling people that I have MS.

Your diagnosis is private and personal. You do not have to share your diagnosis, and if you decide to share, you only have to share what you feel comfortable sharing. This is especially true in the workplace. There are rules and policies to protect employees with disabilities. Be sure to become familiar with your company’s policy before sharing it at work. 

MS is the most common neurological disorder. There are more than 2.5 million people worldwide living with MS, which means there are many people focused on MS care, and research and development. Because of this, you will most likely encounter others whose lives have been directly or indirectly affected by MS.

Be prepared for different reactions. Some people may be curious and want to learn more about MS by asking a lot of questions you might not be ready to talk about just yet. Others may not want to go into detail because the topic makes them feel uncomfortable. You might also find those who are confused and don’t understand what you are going through because you “look” healthy. Whatever a person's reaction, talking about it with them can be really helpful. Try to look at people's questions objectively and don't take them personally.

Keep the conversation going. If you choose to share, you don’t have to cover everything in that first conversation. It may take several conversations over a period of time to share your journey or your current health situation. Your health and symptoms might also change or fluctuate over time because MS can be unpredictable. If you are open to keeping the conversation going with those people in your life who you trust, it can greatly help them know how to best support you and prevent you from feeling alone. 

Timing is everything. If it doesn’t feel like the right time to tell someone you have MS, don’t force it. You will know when the time is right.