Often times, words don’t come out the way they should when you try to talk about serious issues such as health. Talking about multiple sclerosis can be difficult because it is often an “invisible” illness. Many of the symptoms of MS cannot be seen and it may be harder for friends to understand and relate to what you are going through. In fact, diagnosing multiple sclerosis at an early stage is tricky because such symptoms tend to come and go, at times even disappearing for months.
Being able to be open about a sensitive matter such as MS takes time and courage, but speaking up does have its benefits. It can help you to face decision-making together with family, friends and loved ones, it can help you share the load, and it can help you to manage the stress of hiding your condition. You may be waiting for the right time to tell your friends or you may want to protect them from worrying. While speaking up can be stressful, so can hiding your condition. If you find it difficult to talk about personal issues with your friends, there are various methods that can help make things a little bit easier:
- Decide how much you are willing to share. Depending on your relationship with the individual and how much time you spend with them, assess how much they really need to know about your condition. Begin by sharing little information at first that they will be able to understand and then continue sharing more information based on their reaction and interest.
- Start by explaining what exactly multiple sclerosis is. A good clinical definition from Mayo Clinic is: “Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause the nerves themselves to deteriorate or become permanently damaged.” You don’t have to use a textbook definition, but it can help others to truly understand how the condition has taken a tool on your health.
- Open up about living with MS and the impact it has had on your daily lifestyle. If your friends seem interested and concerned, it can help to share your experience with MS on a day to day basis. Explain to them that MS symptoms vary greatly from individual to individual and emphasize that nobody’s symptoms are exactly the same. Describe some of the challenges you face, such as canceling plans or leaving an event earlier because you feel tired or sick, even if you look perfectly healthy on the outside. The reality is that such symptoms of MS can make it hard to commit to a regular social schedule and this is something you will have to explain to friends who would like to see you more frequently.
- Reassure them of the ways that MS has not changed you. Some friends may burst into tears during the conversation and this is OK. It is natural for individuals who love you and are concerned for your well-being, not to want to see you hurt or suffering. Reassure them that nowadays there are several medications available to treat MS and that you are taking all the recommended measures to care for yourself. If they need some time to calm down and “recollect”, perhaps try spending 5-10 minutes talking about a different topic.
- Avoid words such as “cures” and “miracle medications”. The mere fact is that there is no cure for multiple sclerosis; however, particular treatments can help manage symptoms and alter the course of the illness. The best approach is typically to explain to your friends that you and your neurologist are continuously working together to choose the best management strategies for your symptoms and the overall condition.
- Answer any questions as openly and truthfully as you can. The end of conversations relating to MS specific news may be followed by a few questions from your friends. These questions are your opportunity to raise awareness about MS. If they ask, let them know how they can best support you. It may be a relief to both of you to have a caring individual close by.
An individual’s knowledge of MS can range from nothing at all to know-it-all. Friends all may deal with the news about your condition in several different ways. From your perspective, the way they deal with it may be supportive or not so supportive. Some may panic, while others may remain surprisingly calm. Some will go out of their way to help, and some may even avoid you because they don’t know what to say or what to do to help. This can be hurtful and it is hard not to take such matters personally.
The first step in preparing yourself to deal with such reactions is to try educating friends. If you want others to understand you and your MS, then you are the one who is going to have to present it in a way you intend for them to see it too. No matter the individual’s reaction, you need to understand that it is difficult to comprehend something fully when you are not going through it yourself. Encourage your friends to talk openly to you about your MS and how it makes them feel. What’s more, there is a very popular article known as “The Spoon Theory”, written by Christine Miserandino and it depicts her personal story of living with Lupus. This article is a great analogy of what it is like living with a sickness or disability. If you haven’t read it, do so and share it with friends who you would like to explain MS to.
You are still the same individual you were before your diagnosis, but you will have to face new challenges and telling close friends can help you face them together. You may not be looking for pity or sympathy, but surely you do want your friends to make an effort to understand your condition and how it is going to impact you moving forward. Provide them with a few online resources where they can learn more about the condition and ask them to join you in a few MS events. Dealing with such hardships together can strengthen and develop relationships. Many individuals with MS have even stated that they consider this as a time when they found out who their true friends were.
Whenever and however you decide to tell your friends about your condition, be aware that the majority of those diagnosed with MS find that they receive immense support from those closest to them. While there is no guidebook to give friends nor are there rules for what to say and what not to say, addressing the subject of MS face-to-face is a good place to start. At the end of the day, the conversation you will have with your friends about MS is really up to you – your timing, your voice, your need for support, and your level of comfort.