When I was first diagnosed with Multiple Sclerosis, shame consumed me. Guilt, too. I am not sure I could have named these emotions at the time, but they were there anyway, and they lingered for years.
These feelings of shame and fear kept me cut off from myself and from others.
My greatest fear was that I would become a burden to the people I love. I was supposed to be strong, independent and entirely self-sufficient—not weak, disabled and reliant on others. Honestly, I was disgusted and disappointed with myself for getting this disease. My diagnosis felt like a blemish and a personal failure. I was letting people down.
Coming to Terms with a Multiple Sclerosis Diagnosis
As a doctor, my emotional response to my own illness surprised me. I often coach my patients in self-acceptance and self-kindness. I reassure them that they have nothing to feel guilty about or ashamed of. I urge them to let people in and ask for help. People want to help, I tell them. But when I got my own diagnosis none of this seemed relevant or achievable.
MS is a neurodegenerative disease and one that is highly variable between people. I have been lucky. Fifteen years after diagnosis, I still have very few physical manifestations of the disease. For me, the journey has been about warding off progression, dealing with minor physical nuisances and living with the ‘what ifs.’ In the beginning, because I could, I hid my diagnosis from most people, and in fact it took more time than I would like to admit for me to even admit the reality of my diagnosis to myself. This secrecy only fueled my shame and guilt.
Slowly, over years, I have come to terms with my disease. I now see clearly that it is not the enemy, but a part of me. Learning how to say “I have MS” out loud was a tremendous relief. I wasn’t hiding anymore and this self-exposure and authenticity opened the door for genuine connection with others. It was a first step, anyway. Most fundamentally, our willingness to reach out to others requires some degree of self-acceptance and self-love.
When Asking For Help Gives—Not Takes
But still, all these years later, I am not very good at asking for help. My can-do mentality still dominates. The tape runs in my head: I am a fighter. I can do it alone. I don’t need anyone. And so far, my body has not humbled me. I am still able-bodied. To date, the help I have needed has been more emotional than physical. While this is a tremendous blessing, it has made it easier for me to perpetuate the myth that doing it alone is the way to go.
When I step outside of myself, I see clearly that this isn’t true. I have been on the other side—as a doctor, a friend and a family member—and I know how good it feels to be called upon to help.
From this perspective, I understand that asking for help is a gift to others and essential to true intimacy.
If we don’t take these risks, we will all be trapped in isolation.
I love it when my neighbor knocks on the door and asks to borrow an egg or a cup of flour, and I am thrilled to say that this actually happens in my neighborhood quite a lot (usually with me doing the asking, finding myself mid-recipe without the ingredients I need). When I ask, my neighbor feels she can ask back, and vice versa. It feels so good to be able to give and receive in this way.
Letting people in to illness is definitely scarier than asking to borrow a stick of butter, and infinitely more vulnerable. It requires us to expose our imperfections and our neediness, and to admit that we can’t do it alone.
It takes tremendous courage and strength to let people in to illness, but it is such moments that solidify human relationships.
I am grateful when my friend asks me to drive her to a chemotherapy appointment or watch her kids when she is dealing with the aftermath of her treatments. I love being able to bring friends in need a meal when they cannot cook themselves. It is a relief to know what to do and an honor to be of use, to be let in, to be trusted. Giving in these ways allows me to feel more connected, less alone.
Our cultural obsession with self-sufficiency and independence is over-rated and actually detrimental. It breeds loneliness, which is epidemic and corrosive. I see it everyday in the clinic where I work, especially in the elderly. Living alone behind closed doors, people are yearning for connection but often don’t know where or how to find it. And the more we dig in to self-sufficiency, the more isolated we become. It feeds on itself.
Vulnerability is a Strength, Not a Weakness
What I am learning (slowly!) is that sharing all of myself—blemishes and all—and leaning on my friends and family is the only way to truly heal. I have made progress in terms of sharing the fact of my disease, and sometimes even admitting to my friends and family when I feel stressed and scared and in need of emotional support. Once or twice, I have even accepted more concrete help, like taking a friend up on her offer to accompany me to an MRI appointment, but there is definitely room for improvement here. I only hope that I will have the courage and the humility to ask for help as I become more physically dependent, whether from my MS or from the inevitable progression of time.
It is true that in exposing our vulnerabilities we risk being hurt and disappointed, and this will undoubtedly happen from time to time, but what is the alternative?
Ultimately, fostering interdependence nourishes and heals us all. It is these moments of connection and intimacy that make us human.
Whether we are currently patients, caregivers or both, we will ultimately embody both roles at some point in our lives, and it is important to think about giving and receiving with this in mind.
What keeps you from letting people in and asking for help? What can friends and family do to make the asking easier?
Can you think of a time when either giving or receiving help has brought you closer to someone in your life?
Read Dr. Brewster’s blog post on how her multiple sclerosis diagnosis has shaped her identity.
Here When You Need It
Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website, where you can share updates and receive encouragement and support from your community.
Annie Brewster is a graduate of Harvard Medical School and a practicing internist at Massachusetts General Hospital in 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 <a href=”http://www.healthstorycollaborative.org/”>Health Story Collaborative</a>, a nonprofit organization committed to empowering patients and their loved ones to find meaning through storytelling when confronted with illness.