Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32 Page 33 Page 34 Page 35 Page 36 Page 37 Page 38 Page 39 Page 40 Page 41 Page 42 Page 43 Page 44 Page 45 Page 46 Page 47 Page 48 Page 49 Page 50 Page 51 Page 52 Page 53 Page 54 Page 55 Page 56 Page 57 Page 58 Page 59 Page 60 Page 61 Page 62 Page 63 Page 64 Page 65 Page 6621 MSFocus Summer 2016 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. By Annie Brewster