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Managing MS as a Team

By Matt Cavallo

Take it from me, multiple sclerosis can be one of the most lonely, isolating diseases. The invisible nature of the illness can make it hard to communicate how you are feeling not only to family and friends, but to employers, coworkers and your medical team. We often build walls to isolate ourselves from having those hard, awkward conversations about MS. If you are feeling like that, you are not alone.

I have been living with MS for more than a decade. When I was first diagnosed, I isolated myself from everyone. I pushed my family and friends away because I didn’t want to talk about my MS. I even pushed my wife away telling her that she was young and could find someone else to have a normal life. I was stuck in a deep depression and just wanted to be alone in my misery. Luckily for me, none of my friends and family stayed away and my wife didn’t give up on me.

In addition to my loved ones, I was very evasive when talking about my MS at work or with my medical team. I wanted everyone to believe that I was fine and I told them what I thought they needed to hear. While this was helping me avoid or minimize a conversation, I didn’t realize at the time that I was doing myself a disservice.

Today, I realize that living with MS is a lifelong commitment and that you don’t have to fight it alone. There are many people on your life that can be valuable members of your team to help you battle the disease. It is important that you learn, however, how to effectively and opening communicate in order to get the support that you need from each person.
  • Spouse, partner or significant other – The person in your life that your MS affects the most is your spouse, partner or significant other. MS can affect your mood, energy levels, and intimacy. Oftentimes, if your partner doesn’t understand the disease pathology, they may feel that those MS symptoms are their fault. Keeping your partner on your team to manage MS is critical. To do so, you have to tell them what is going on with you. As uncomfortable as a conversation about intimacy or sexual dysfunction may be, if your partner does not understand that it is your MS acting up then they may blame themselves to the detriment of the relationship. The more your partner understands, the less invisible MS becomes.
  • Immediate family – Familial relationships can be tough without a chronic illness. Throw in a MS diagnosis and life of chronic illness and those relationships can get even tougher. Family members typically also feel very connected to your diagnosis and want to help fight the disease with you.  Your diagnosis might also affect each family member in a different way. It may be helpful to establish boundaries for disseminating health information to family members and for sharing feelings. You many choose to only share certain information with family members with whom you are particularly close. Your diagnosis may also be a chance to re-evaluate or reboot family relationships that have been strained or toxic in the past.
  • Children – When an adult doesn’t understand what is happening to them with their disease, it can be upsetting, confusing and frustrating. Imagine how a child must feel watching a parent deal with a disease they do not understand? There are different strategies for communicating MS to you children depending on their age, cognitive and emotional development. The bottom line is that no matter where they are at they want to believe that you are going to be OK. They also want to be your cheerleader and help however they can. Be strong for your kids, but also let them in and answer their questions. The more involved they feel in helping to manage your disease the more connected you both will feel with each other.
  • Friends – Being diagnosed with multiple sclerosis will show you who your true friends are. Many do not know how to react, which is okay. If they say the wrong thing, like you look great, just know that they are trying. Comments like that are an opportunity for you to educate your friends to how you are actually feeling and to let them ask questions about your disease.
  • Employers and coworkers – This is probably the most difficult relationship dynamic. Many MS patients fear that repercussions like losing their employment or being demoted could result from discussing their diagnosis with their employer. This is a judgement call on your part. The ADA requires workplaces to make accommodations and to not discriminate based upon your multiple sclerosis. In my experience, sharing details of my MS has provided me with an extended support system at work that helps reduce stress and allows me to focus on the task at hand.
  • Medical team – The most important relationship that a person living with MS has is with their neurologist. However, that relationship happens mostly during fifteen minute windows of time. Sometimes you don’t remember what you wanted to talk to your neurologist about until you are on the way home. Another mistake patients makes is putting on a brave face for our neurologist so that we get the validation that we are doing great.  In order to manage your care effective you can to be prepared to address all of your medical concerns openly and honestly during your appointments. The best way to do this is to write down a list of topics that you want to discuss ahead of time and hand that to a staff member at check-in. By doing this, both you and the neurologist will be prepared to discuss all of the important aspects of your health. It is also important to coordinate care between your neurologist and other doctors. Make sure that the neurology notes are forwarded to your PCP or family doctor. Transparency and coordination between providers will lead to a more personalized care experience.

Managing MS alone is tough, isolating way to go through life. Forming a team to help you manage your condition can lead to improved outcomes and motivation to keep fighting. Your partner is important to have on your team, as well as, friends and family. If you can include your workplace that will help manage stress so you can focus on feeling better. Being honest with your neurologist and coordinating care among your other providers can lead to a more personalized care experience. If you can manage relationships with these team members, you will realize that you do not have to fight MS alone.