Everyone who has been diagnosed with Multiple Sclerosis knows it is a dual journey. You are in it alone and you are in it with everyone in your life, just in different ways.
You are in it alone in the way that you are the only one who knows what toll the disease is taking on your body. You are the only one who feels the pain, has the muscles spasms, experiences the overwhelming fatigue and the fear that accompanies the uncertainty of MS. Those of us who have MS are the only ones who know firsthand what our symptoms are and how they affect our lives. We are living it in the first person.
However, that does not mean we are alone with the disease. Because it is now part of who we are, MS also affects everyone around us. Most of all it impacts the people who love and care about us, and that is usually our family. Armed with information and openness, our families can be our greatest asset in coping with this disorder.
Because MS can strike at any time in our lives, there are a myriad of possibilities regarding our family structure when we are diagnosed.
For those in their 20’s and 30’s, it is a time of dating, early marriage and young families. These are all challenging times in our lives, hard enough without the added burden of MS. When you are diagnosed in your 40’s and 50’s, often you have been in a long term relationship and have older children. You are more established in life, but an MS diagnosis can pull the rug out from under you.
No matter what age you are or what stage of your life, the first thing to do is learn together as much as you can about the disease. As the MS Society says, knowledge is power. They are a great resource of easy to understand and accurate data, which is just what you need in those early days of distress and apprehension. It is essential that your family know as much about MS as you do. The more you know, the less overwhelming the disease seems.
Talk together about MS. Don’t pretend you are fine when you are not, but on the other hand, share when you are feeling good. Discuss how you feel but be open to your loved ones expressing their feelings. While they don’t have MS, they care about you and are just as likely to be experiencing grief and worry about the future. Allow them to have their own bad days. Encourage your children in helping you with chores and activities of daily living. It is a great way for them to learn empathy and compassion. Foster an atmosphere of open communication. And keep your sense of humor! Having MS does not mean you must be sad all the time. There is still much quality of life to be had. That is one of the positive outcomes of learning about the disease and fighting it together.
Don’t isolate yourselves. Consider taking advantage of the programs the MS Society has available for families. Ask your family members to come with you to your doctor visits to help them understand more about the disease process. If a break is needed in care giving, explore respite care. If you find your family is stuck in sadness or denial, it may be time to reach out to a professional for guidance. By offering strategies for coping, a skilled counselor can assist a family with the very real sorrow that accompanies the diagnosis of a serious illness.
The key to moving forward together is being open about the disease. Acknowledge loss and anxiety but also celebrate the fact that you can support each other. You are the only one who knows what it feels like to have MS, but that does not mean you are alone. Recognizing how MS impacts all of you makes you a team in battling the illness. Being a team is what family is all about.
