There is a common experience that many newly diagnosed people describe. They say that when they tell acquaintances of their diagnosis, the acquaintances are quick to tell stories about other people they have known with MS. The details of the unknown MS persons’ struggles or accomplishments are relayed, often with an expectation that the newly diagnosed person will go through the same experience, i.e., “my cousin has MS and he just ran the Boston Marathon” or “my mother has MS and she is really struggling”. Those scenarios seem to make the tellers think they are more attuned to the newly diagnosed person, yet we hear that the listener may feel a sense of distance and confusion. It is often said that MS is different for everyone who has it and members of the general public have usually only met one or two people with MS. Their experiences color their assumptions about MS and their response to the person who reveals having just been diagnosed. Also accompanying these stories may be a set of suggestions about what treatments, therapies, or other recommendations the newly diagnosed person should use to make the MS better. Rather than relieving the person with MS, these recommendations and advice can be confusing, as the person may not have heard the same recommendations from their health care providers and may have been given very different advice. Thus, it may be helpful to tell people you know whether or not you are ready to hear stories about the experiences of other people with MS.
Newly diagnosed people describe another difficulty in relation to the people in their lives. If they have recently recovered from an exacerbation, they may be told “you look GREAT”, often accompanied by the assumption that they must feel as good as they look. The problem of dealing with the world when your symptoms are mostly invisible is a significant one. Sensory symptoms such as pain, numbness, tingling, and fatigue are not obvious to anyone except the person having them, and it can be strange to have someone say that you are back to normal when your hand is still a little numb. We also tend to base our decisions about a person’s ability on their appearance and making the distinction between looking good and feeling good to another person can feel daunting. It isn’t practical to wear a sign on your head that informs the world that you are still adjusting to your MS and symptoms, but it may help to remind people in your life that it isn’t out of your mind, even if it’s out of their sight.
The shock that accompanies the words “you have multiple sclerosis” may make it impossible to listen to any additional advice or information from the doctor. Someone who is newly diagnosed, therefore, may end up asking a lot of questions about the disease after the visit is over.