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 6622 MSFocus Summer 2016 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. Further- more, 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.