Letting People Into Your Health Journey
Annie Brewster | 08.25.16
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 book, “The Healing Power of Storytelling,” or her 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.
I was diagnosed in 1996, before symptoms started. I am a pianist, suddenly unable to open my hands wide enough to get 8 keys. Nobody in my family had MS, nor my grandparents. Last year a cousin younger than me had MS, she is 40. I have primary progressive MS. I do not walk for the last 18 years, I was born in 1962. I have had 6 strokes and 1 heart attack.The Rebif (beta-1a) did very little to help me. The medical team did even less. After roughly five unending years of trauma in the family my MS developed into progressive. There have been many changes in the last 3 to 4 years. Many falls, many fractured bones, and three moves all in five years. I have gone downhill. Considerably. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment for Multiple Sclerosis, I started on MS Herbal Treatment from Kycuyu Health Clinic, the herbal treatment immensely helped my Multiple Sclerosis condition, i had huge improvements.
Annie, you inspire us. An old Japanese cultural concept is : “The gift is in the receiving.”
Come visit us on our journey too at Team Masako on CaringBridge !!! Merry Christmas
Well said. i am totally agree here. Its really appreciable piece of information. Thanks for sharing.
Hi my name is Christine I would like to volunteer helping driving somebody sitting with somebody and just kind of listening helping family I’m not good with computers maybe running to the store for the family doing stuff for the family or the patient
Much wisdom presented here. My best friend had a brain aneurism and it took awhile, but her husband finally said….no one wants to be the one who is vulnerable and in need, but you see people step up and use their gifts and as said in this article – it is a gift to them to do so! Someone has to be needy for others to use what God has given them….we saw the body of Christ working in a whole new way!
May god continue to bless you!!! You are amazing!! Thank you for sharing. Will be praying for you!
Doctor Brewster, I want to thank you and Caring Bridge for this inspirational story you have shared. I had tears in my eyes because of the special woman you are. Doctor Brewster you remind me in so many ways of my brother Rabbi Shaya Kilimnick who also posts on Caring Bridge. He has been suffering for the past eight months with cancer and is always attacked with weakness and fatigue. He had a Bone Marrow Transplant which was successful and has given my brother a new beginning in life and I thank G- d everyday. My brother is my life. Thank you so much for posting your story and I wish you well.
Your gift of writing and sharing is a model to us all. I feel stronger just by reading your story. Thank you.
My youngest sister was a critical care nurse at a hospital in Longview,WA until MS ended her career. At the time she told me she didn’t know how she would manage, because a nurse is what she was. Now she has been bed fast for several years. Besides being my amazing sister, she is also my hero. Ask her how she is doing and her reply is always, “I’m just dandy”…..
Dr Brewster, There are no words except gratitude after reading your post. You are my inspiration! I have been fighting and hiding a 15 year Stage IV Lung Cancer and met to brain 2x. I’m still strong, independent, playing normal, working full time, loving my
time with my family. You are truly a blessing. On my prayer list and hope to meet you! Nancy Carpenter
I love your story,,,,,I have experience a rock bottom situation at x-mast and ended up in River View at 53 yrs old and it taught me how to be real and I needed help because I was strong and had to fight because my son was diagnosed with Multicentric Castleman’s Disease at the age of 7 and then took his life at 17 1/2….and so much more…..Love your story, and may God bless you with good health……hugssssss
I go day by day praying to my Lord asking for healing. I want to be able to walk again and also not be a burden to my caring wife. But my Faith in Almighty God tells me that in His good time. I know that He is not through with me yet. I may sound selfish, but the two ministries I am enjoy being involved in are not a challenge to me, they are part of me. I miss being able to do them. Two of our churches ministries that I really enjoy are working in our Media department and writing articles about different members and their individual ministries. But I find a lot of encouragement when I read about the Apostle Paul who asked God three times to cure him of his thorn in his side. God said, “No”. I love my Lord Jesus Andi have decided to stop feeling sorry for myself. Besides I know where I’m going and I won’t suffer there. In fact, I will dancing all over God’s Heaven.
Thank you for sharing your beautiful story. It is a fresh perspective on giving, receiving and relatedness with others.
Hi, I really enjoyed reading your story, My step sister’s husband is ill with either ms or md. He is in a wheel chair. He has been for the last twenty or thirty years. I hope there will be a cure soon.
A beautiful act of love in sharing this story! Thank you Dr. Brewster and Caringbridge! This is so healing on so many fronts!
I am an 88 yr. old widow and am finding the need to ask for a ride to the Dr. occasionally and this has been difficult for me since my children are the ones I ask and I still feel I should be caring for them and not the other way around. Your story has touched my heart and makes me realize that I need to share my needs with them’
I know what its like to be on both sides of this problem….and have gained courage to ask for help if I need it and I love being asked by someone for something whether it be an egg, half cup of flour or if I will escort them to a doctor appointment or for a test, if makes me feel loved and wanted. I need people in my life, I realize it now but it wasn’t so long ago I wouldn’t ask for help but have always volunteered my help if someone needed it so I am learning that I am vulnerable too and need help once in awhile.
Late husband passed almost 10 yrs ago. Had 62nd b day in specialty hospital an hr from home. 42nd wedding anniversary spent in same place. Needless to say, last b day and l a s t ann. Very humbling to ask for help when you are used to doing everything yourself. But, hey, no regrets. We had been in all 50 states. The reason for this note is to let you know I funnel all my donations to ms (doesnt deserve to be capitalized) to scholarships for the kids who want college and ms has struck down maybe the bread winner in family and college isn’t assured! Think about it! I have read a very thick book on ms. It has been around since 1850’s. I will stiil donate $$$ but not to research.
What an inspirational story you have shared, Dr. Brewster. I can relate to not wanting to ask for help, but when you realize that so many people will help if you ask (and often times they will offer because they truly want to), it is truly a blessing. The world is full of so many wonderful and caring people
I wish you the very best in your journey and thank you for being so open and candid. God Bless!
The human spirit is our key to life in health and in sickness, it is the life blood of living
persons and which keeps our body animated. It defines who we are and how we
think as well as how we interact with others. It follows us home.
Thank you!
I believe that being able to share a problem with others who are going through a similar difficulty–especially when what is shared is–* experience,* strength and *hope–is immensely helpful. That is why I believe traditional 12 step programs are so effective. The traditional 12 step program uses God as its source of strength and direction. God gave us others to build each other up.
So grateful Dr. Brewster found her strength to share her story–I am sure that she will be able many who follow through with her advice.
I want to wish you good luck, and I hope you can recover from this. I’ll be praying for you.
Dr. Brewster, thank you for your personal openness and vulnerability, which seem to be rare traits in the medical community. This is an encouragement as I suffer with malignant paraganglioma. Your words nicely fly in the face of the empty mantra “physician, heal thyself.” As humility is the beginning of wisdom, so asking for help from another is the beginning of humility and of healing. Seek the Great Physician.
Thank you for sharing your story in order to help others.
I’ve been following CB journals for several friends & family over a period of 5 years… so today when I was requested to “re-set password”, I was a bit annoyed! BUT things happen for a reason, and reading your story was the best thing that could have happened today. My grandson is currently at Craig Hosp Rehad in Denver with spinal cord injuries, not MS, but the message you convey is perfect for all patients, care-giver’s, family & friends who , like our family, is struggling on how to help, and “let help in”. Thank you so much for posting your story, and wise words..I wish you well, continuing strength, and lots of love .
Great read. God bless you strong woman! Your words and plight are helping everyone that reads your journal.
Peace, Love and Light❤️✝❤️
Thanks for you testament and sharing your story
I don’t know you but know you are a very special
doctor and person
a very moving story
Very lovely, I can relay to you because my sister was an MS patient and my first cousin also. I work with the MS foundation here in Puerto Rico and I am completely committed to this cause and one of the doctor here who works hard for all his patients. Thank you for sharing your story. God bless you and keep you strong.
Dr. Brewster,
Sometimes, if we let it, our disease can also be a gift to us. It can free us from the burden of having to be self reliant, needing to prove something to the world, believing that self sufficiency is the epitome of success! Our imperfections and vulnerabilities allow us to recognize the humanity in others. Perhaps we gain wisdom from it. Wisdom cannot be taught in a book but must come out of self examination and totally being in the experience with complete authenticity. Your journey has been enriched by the MS diagnosis and you have gained wisdom! I am rooting for you. Truly, you are not only a healer, but have become a teacher. Anita Das
God bless you. The one word interdependence really hit me.we must keep God as our ultimate relationship. May we all be strong enough to be dependent. We can all learn something from your journey. Thank you
I stumbled across your story here. Very encouraging! My husband was diagnosed with stage 4 colon cancer 31/2 years ago. We were the ones that were strong for everyone else and too had to be vulnerable and receive help and encouragement. As his wife I learned to fight and be his advocate. To make a long story short, after begging the doctors at Northwestern here in Chicago to put him in a clinical trial, they finally said “yes”. The immunotherapy they are using on him due to him being MSI-high has been working beyond their expectations. The doctor finally said one day. “This cancer is not going to take your life”! We are grateful beyond words and truly see life through a different lens now.
Hola, leí su historia, y da ánimos para continuar, a veces uno cree que los doctores no se enferman, y somos todos iguales. Gracias,
For the long term physically impaired “believer” there is no such thing as “luck.”
Every part of this life is weighted in light of The Word of God and a learning experience leading to trust in God and thankfulness to God, from whence comes peace and then joy, no; maybe those two are twins, compliments of The Son of God.
Thank you for sharing. I’m learning how to be vulnerable. It’s not easy. But you’re right, letting others in is part of the healing… Keith Moore Ministries has a series of teaching on God’s Will to heal. You can listen for free on audio (mp3).
I’m currently listening to his series called, Reigning in Life… May God’s healing power flow over you, in you and through you. May His Name be glorified through you.
I really enjoyed reading your story. What an inspiration you are!
Thank you for letting me know that you to can ask for help. I gave help to my husband of 50 years when he had blood cancer and died in 3 months. Hopefully if I am in need I can also ask for help
What a great story. Sounds like you are on the right track now. For those of us who are so used to taking care of everyone else, food wise, company wise it is hard to see it from the other side. I have had my physical problems, but fortunately made it through all of them with no great problems. But now my husband is beginning to show some signs of memory loss and it is upsetting him and making him a different person than I have known for 64 years! I don’t want to be away from him for any length of time and he wants me near by all the time. I am a person who has been very involved with what is going on in every part of our life, and he was too, but now he doesn’t remember people’s names ( I tell him the name before the person comes up) he does not hear as well in crowds so we are not being as involved much, and I don’t want to upset him in any way. I don’t mind hanging back, because I want him to be happy. He has stopped taking the aracept which I thought was helping, because something he read said it was not good for him like so many other things he was taking. He stopped taking everything. He is in good health and exercises daily as do I. We are doing fine now, but I know as time passes we will have to get help. I know there are lots of sources in Austin and I only have to reach out to them, I just must learn to do that since I am used to being on the helping side, not the receiving side. I know we can do it….you did! We will work on it. Lots of luck and good health for many years to come. Dolly
I appreciate so very much this article. As someone who has to deal, off and on, with the aftermath of Guillaume Barre, I have felt embarrassed when it occasionally limits my activity. Thank you for encouraging me to be authentic.
God bless you. What an inspiration you are !
Thank you. It puts a new spin on how hard it is to ask when you think you can do it all yourself.
Dr. Annie Brewster, your story mirrors mine. I am recovering from multiple injuries due to a car crash, and I wasn’t accustomed to asking people for help. I lived my life in a self-sufficient, Midwest manner prior to the awful accident. Doubly challenging, this all happened to me when initially moving to a town where I was a new resident. Indeed, it takes courage to reach out and get over pride-related deficits! Wishing you the best on your journey.
Gratitude!
What you say resonates deeply with me, because I deal with MS as well. I also found myself doing the “I’m strong and self-reliant all the time” bit, even when I wasn’t… Part of that is because as a society we sometimes view a need for help as a weakness. The way you view it – as a way to open up to people around us – is truly inspired and inspiring! Coming to terms with the fact that we’re human, and vulnerable, teaches us and others around us about compassion and connection.
Thank you for this personal knowledge you have attained and are willing to share. It is a beautiful testimony of your heart. And, you are right – we all need to learn to lean on each other.
Doctor Brewster I’m a layman. This means my knowledge is far more limited than someone so highly trained as you. Some while ago I read that many diagnoses of MS are suspect. In that article it was suggested that a person who drank a lot of diet drinks that have aspartame can give symptoms that are comparable to that of MS. No doubt you know this, however, I, too care about people who are suffering. If this has any merit in your case, I can only wish you the best in recovery.
Bill Johnson
Beautifully said…and so true! Thank you!