Life with MS

I love my husband, but he is the king of putting his foot in his mouth. In the beginning of our relationship, it took me a while to gather enough courage to tell him about my multiple sclerosis. I was terrified that he would consider me damaged, or a high-risk investment given the very real possibility of significant disability in my future. I finally blurted it out on our third date, after a glass of wine at dinner. “Oh, I have a friend from college who died of that,” he said.

What!? Was he serious? As a doctor, I knew enough to know that people do not die from MS, but still, this was hard to hear. I felt deflated. People do die from complications of MS, I thought, and fear and shame surged inside of me.

My husband (then boyfriend), however, quickly moved the conversation along, unfazed by my big reveal. He didn’t run, and knowing him as I do today, I now realize that this was just one of his characteristic gaffes.

Now married 11 years with four kids, I still struggle with how to guide him in best supporting me when it comes to my illness – and yes, I do think it is my responsibility to guide him. We have to tell people what we want, which is not always easy. I admit that sometimes I have contradictory desires. For instance, I want him to never forget about my MS, and yet I don’t want him to treat me like a sick person. I don’t want my disease to color the way he thinks of me.

Being a supportive family member can be tricky for a whole slew of reasons. Each person is unique, and illness affects each person uniquely. Living with illness is an evolving process, one that is never static. Illness is emotional – both for patients and caregivers – and emotion can get in the way of clear judgment and rational thinking.

I have been the person who is ill, the family caregiver, the doctor, and have experienced firsthand the challenges inherent in navigating each of these roles. From the patient point of view, here are my reflections on how to best support a loved one with MS and, more specifically, what I want my own family to know.
 
Remember: My MS is a part of me, but not all of me.

Those of us with this disease live in the realm of the unknown. Nobody fully understands what causes MS, and no one can predict how it will, or will not, progress. Everyone with the disease is different. There is no road map. It is often invisible on the surface, but silently and relentlessly destructive underneath. As a patient, I never forget it and anxiety often percolates within me.

While I don’t want my loved ones to treat me as if I am ill, I want them to always remember that this is a part of me, and a major factor in my life. I recognize that this is a tough line to walk.

I have been known to seethe when my husband says things like “I totally forget that you have MS because you are doing so well. You seem fine!”

He means well, of course, but how could he forget? On the other hand, I get frustrated when people focus excessively on my MS, starting every interaction we have with a loaded question and expressions of concern – “How are you, really? I know how hard this is. I worry about you.”

I feel like shouting, “I am totally fine!”

So, what do I really want? While I don’t always know exactly, in general terms, I want those close to me to keep my MS in their awareness, but to remember that it isn’t all of me or all I think about. It exists. It is a factor in my life, but it is just one part of me. We all have challenges, and this is one of mine. I definitely don’t want to talk about it all the time, but I also don’t want my loved ones to forget.
 
Let go of expectations. Be flexible.

When it comes to my MS, I admit that I am not always clear about what I want from people. In fact, what I want might change day-to-day or even moment-to-moment. I don’t have this all figured out, and I know this can be hard for family members who are trying to help. My advice? Try your best to be flexible and fluid, and have no expectations.

I have felt most supported by those who have accepted this fluidity and who have nonjudgmentally supported me without any attachment to the outcome. Furthermore, it’s a tremendous relief when I can trust that the person trying to help is taking care of their own feelings and that I am not responsible to help them come to terms. Inspired by what I have learned as a patient, I often state this explicitly when I am in the caretaker role: “I am here to help you in whatever way you need. I expect nothing from you in return. Don’t worry about me.” And I mean it.
 
It’s not about you. Don’t take it personally.

I imagine it is very difficult to have a loved one with MS – in some ways even more difficult than being the one with the disease. You have to sit by passively and watch, as a bystander, while the illness undoubtedly triggers your own anxiety, frustration and sadness. Paying attention to and processing these feelings is critical. Talk to people and get help, but, whenever possible, leave the person with the diagnosis out of these conversations.

My mother used to come to all of my MRIs and neurology appointments with me. She is an incredibly supportive figure in my life, but I soon learned that her presence at these visits was unhelpful. Inevitably, she was more nervous than I was, or at least she talked about her stress more openly, and I would feel guilty and responsible for her feelings. Her presence drained rather than nourished me, and I stopped inviting her. Ideally, I would have given her guidance on what I needed from her, but I wasn’t able to do so in those moments. I wish she had been more aware of how her feelings were affecting me.

In a related vein, don’t be upset if you’re told you are not wanted at a given appointment, or if your family member doesn’t want to talk with you about their illness. This is not a personal rejection. It is not about you.
 
Trust your intuition.

While I have suggested flexibility when it comes to supporting someone with illness, there are times when this does not apply. “Being there” for your family member not only requires sensitivity and understanding, but also, at times, boldness. Trust your gut.

As a patient, I know that guilt can interfere with my ability to ask for help, or even to identify what I really want or need. Often, I refuse offers of help because I don’t want to be a burden. For example, when my mother asked if she could come to the hospital to sit with me during my two-hour medication infusion, I adamantly refused. I told her it would be boring, and that I would be fine. Aren’t I always fine?

She asserted herself. “I am coming whether you like it or not, and you cannot talk me out of it,” she said.

Her pushiness was just what I needed. She sat with me, this time without bringing her own worries into the room. We read People magazine and she got me a milkshake from the hospital cafeteria. We didn’t talk about illness once, the time passed quickly and I was grateful for her presence.
 
Don’t be afraid. You don’t have to be perfect.

We are all figuring this out as we go, patients and caregivers alike. We will bumble sometimes, and that’s okay. We are human beings. If we love each other and have good intentions, the rest will work itself out. Strive for open and honest communication. Ask for what you need. Ask how you can help. Listen. Trust one another.

I don’t expect my family members to always say the right thing, or to read my mind, and I will forgive them if they occasionally and unintentionally say the “wrong” thing. (I married my husband, after all.)
 
Annie Brewster is a graduate of Harvard Medical School and a practicing internist at Massachusetts General Hospital, Boston. She is also a patient, diagnosed with multiple sclerosis in 2001. She has been collecting patient stories since 2010 and is a frequent contributor to her local NPR station, WBUR. In 2013, she founded Health Story Collaborative, a nonprofit organization committed to empowering patients and their loved ones to find meaning, through storytelling, when confronted with illness.