Being diagnosed with MS can be very surprising. Those who are diagnosed are usually very healthy people who have not faced other chronic illnesses during their lifetime. If the diagnosis comes after the symptoms have been lingering for a long time, there may be a sense of relief of finally getting an explanation. Unlike in the past, current technology and specificity of brain imaging today often results in an early and quick diagnosis of MS. Sometimes, after only one episode and a few days of symptoms, the diagnosis of multiple sclerosis is made. It isn't unusual for the recently diagnosed person or their supporters to think that there must be a mistake and a simpler or more short-term answer is really at the heart of the symptoms. No matter what the circumstances, becoming accustomed to living life with MS and adjusting to the diagnosis takes some time and, for most people, some effort.
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. At some point in the process, newly diagnosed people should know the answers to at least the following questions:
- What is multiple sclerosis?
- What is an exacerbation (attack) of multiple sclerosis?
- What treatments are available to manage the disease, exacerbations, and symptoms?
- Are there any situations that should be avoided?
- Are there any health habits to begin now?