What Helps & What Doesn’t Help When Someone You Love Is Sick, Suffering, Grieving A Loss, or in Physical or Emotional Pain?
Someone I love just found out a loved one is very sick, afraid, and in pain. He knows that it’s part of my work to train doctors how to actually serve when others are sick, afraid, and in pain, rather than reflexively fixing, helping, overcaregiving, or controlling someone who is in need, so he asked me to give him some feedback about what might support him to serve his loved one.
I told him that one question my teacher Rachel Naomi Remen, MD asks first and second-year medical students in The Healer’s Art as a way of teaching them how to have these conversations very gently is to ask them to reflect on a time in their life when they were in physical or emotional pain or grieving and suffering.
She invites them to remember that time and then asks them “What did other people do that actually helped you feel loved and supported back then?” And she writes down their answers on a whiteboard. Then she asks them “What did other people do that DIDN’T help.” And she writes down the answers. The two whiteboards are startling- Every. Single. Time.
The “What Helped” whiteboard typically says things like “He asked me what I needed instead of giving me what he would have wanted. He listened. She made me a casserole. She held me while I cried. He didn’t give me advice. She didn’t try to fix me. He trusted my choices and didn’t try to impose his own bias on me. She made me tea. He prayed with me. He handled the details I was overwhelmed with so I didn’t have to do what felt too hard to handle. He cried with me and let me see he was scared too and I didn’t feel so alone. She played music that soothed me. He sang with me. She made phone calls to talk to other people on my behalf so I didn’t have to answer the phone or emails. He started a Caring Bridge site and posted to it daily so other people I loved stayed up to date. She kept asking me every day “What do you need” and reminded me it was okay to be needy and that it wasn’t weak to depend on other people. He showed me that he could be vulnerable and needy too. She never judged me or exert undue influence on me and let me do this my way. He reminded me that I’m whole when I felt at my most broken. He said, ‘No matter what, you won’t be alone through this. I am here.” Things like that.
The “What Didn’t Help” board typically says things like “People gave me advice and tried to fix me. She kept trying to get me to do something she wanted me to do and didn’t care about what I needed. He judged me and made me feel small. He tried to fix me. She didn’t listen. She tried to distract me rather than being with me in my pain. She minimized what was happening to me and tried to convince me everything was okay when it wasn’t okay. He tried to show me a silver lining but it was really about making himself feel better and it didn’t make me feel better. They overwhelmed me with suggestions I was too flooded to take in. He rushed me. She made it all about herself and her pain and left me feeling abandoned and lonely in my own pain. They gave me books I was too sick to read and then pressured me to read them. He cut me off. She tried to control me and didn’t trust me to navigate my own healing journey. He made me feel less than. He weakened me by trying to be the strong one. She never let me see her emotions so it felt like she didn’t care that I was in pain. She told me ‘God doesn’t give you anything you can’t handle.’” Things like that. Year after year, the whiteboards are the same.
I asked my Facebook community to crowdsource this-what helps YOU- and what doesn’t? Here’s what they shared.
- People who can sit with your pain. They can’t take it away, but they can help carry it.
- Holding space. Being there and listening. Letting me vent and rant and cry and just being there with me. Acknowledging that I’m going through a difficult time. Maybe pointing out that together we can get through this …. that’s helpful for me. Every time.
- When I needed it most after a significant loss when I was in shock and grief, my sister was just there, she never made anything about herself. It was like she could read my mind for what I wanted and needed. She gave me the best support I have ever experienced from anybody without being intrusive at all. I don’t know how I would have coped without her.
- Anyone who genuinely listened helped.
- When I was in any deep emotional pain, I remember being told this by very very close ones: “I hear you! What emotions are you carrying? What are you feeling? I understand your feelings. I’m with you in this. Can you tell yourself and repeat this “I love myself.” “I trust I’m being supported.” The idea was to change the energetic field in and around me and allow this new thought pattern to attract positivity about myself. At first, I didn’t believe in it. Then I saw miracles starting to happen. In a nutshell, when in pain, we want to be acknowledged first then this itself creates a conducive field for healing.
- Having my consent gained for absolutely everything offered prior to the action (being in the same room, providing physical contact, adjusting a pillow, offering a tissue)
- When I have been sick, as I have been recently, I felt most supported and comforted when my partner let me sleep in, then brought me a cup of tea. When I don’t feel well, my anxiety flares up and then I want to be held and told that everything is OK.
- Being actively listened to, witnessed, and given a reflective and validating response- and tea, lots of tea.
- It helped when she was there when she was 100% focused on me and listened to me without interrupting.
- Listening, hearing, and responding with genuine care and compassion are what helped. Being prepared to be there whatever happened was fundamental. When my loved one subsequently died, the same expressions of care and compassion from those around me are what helped me cope, and knowing I had done everything in my power to be there alongside my love to share the suffering, grief, and pain meant that I was able – am able – to keep moving forward as best as I can.
- Simply asking, “what can I do to help?” helps so much and gives me a sense of being supported.
- Bring food, cards with heartfelt messages, and flowers, go to the memorial or help plan it, show up and offer help and hugs, share memories of loved ones, and ask for your memories. Show up at the hospital, and pray if the person wants it. Show up, call, text, show up. Facebook messages aren’t enough!
- Being given permission to ‘think aloud’ makes the shocking, new diagnosis real. It took me the best part of a year to integrate this new info. It took a year to even begin to know the questions to ask which health care provider. Many people distanced themselves, not just because of Covid but due to the fact that I was a constant reminder of how shit can go sideways! Those folks have fallen away. It’s the ones who are willing to listen, to genuinely understand, who offer themselves up for a genuine connection.
- What helped is someone making my favorite sweet with their own hands, just sitting with me, praying together, cleaning our home, and taking care of everything from the bills to legal documents until I could stand on my own two feet again…
- When I was in and out of the hospital with cancer, what helped the most was having people take care of the little necessities without me having to make a plan or ask: I’ll take care of the dog. I’ll water the plants. I’ll keep your mother entertained when she visits. Many well-meaning people said to call them if I needed anything, and they meant it. But the ones who simply took care of my own important things were like a team of Fairy Godmothers.
- Sometimes I just want to be left alone…and what I mean by that is this: I need a break from being needed. Everyone that knows me knows for certain that I will resurface…I just want to be able to retreat into sitting with my discomfort knowing no one needs me for a day. A day…I just want a day to “be.” I want a day where I don’t feel beholden to soothing someone else and their need…and/or a day where I don’t feel beholden to soothe someone else for witnessing my suffering. That “fills” me back up.
- The first thing a dear loved one said when I broke the news to the family as a group was, “I’ll move in with you and stay as long as you need me.” Coming from this particular family member, it was so unexpected and such a deep expression of love and support that it lifted so many layers of uncertainty and stress from mind and heart. Just having someone declare willingness to be there was the most helpful.
- When I was diagnosed with lung cancer about 4 months ago, to my complete surprise as I didn’t have any of the risk factors and it was found while having a heart scan, I sent an email to close family members and friends informing them of my diagnosis. I wrote that while I appreciated their care and concern, I requested that no one send me treatment suggestions or anecdotes about any others they knew who had the same diagnosis. If I wanted recommendations or suggestions, I would ask. I let them all know I was comfortable sharing my journey down this frightening and difficult path and would welcome and appreciate their good wishes and answer appropriate questions should they arise. So far those friends and family members who have chosen to stay in touch with me have honored and respected my wishes.
What Didn’t Help?
- People who imposed their wants on me…are pretty much out of my life now.
- What I didn’t want to hear (which I was told): “This will pass. It’s your destiny. It’s ok. You’ll get over it, bla bla bla …”
- Discounting, disbelieving, or denying my felt experience.
- It did not help when I was bombarded with all kinds of advice and recipes and books and I was too weak to even stand on my feet.
- Distrusted my stated experience of symptoms and made up quick “solutions” that would “fix” the issue which is not easy or quick to fix.
- The most unhelpful thing was being told, “Oh, I had that and it was no big deal” when they didn’t have the same thing at all.
- A month after our beautiful first grandson was born still, a well-meaning spiritual friend told me “You know there are many lessons for you to learn from this, don’t you?” I was so stunned by this comment, that I couldn’t even reply. Megan Devine’s book on grief- It’s OK That You’re Not OK, is my top recommendation for anyone wishing to understand how to help a person going through grief. It is much more than a book on grief; it is, in my view, a manual for life. Being able to hold space for anyone going through difficult times, whatever they are, without trying to fix them or the situation is an absolute gift. I speak as someone who (prior to & during my own illness & early recovery) would have been offering platitudes from the “What didn’t help” list. Those platitudes came from the kindest heart, but I was emotionally unhealed, & just didn’t know any better. Following much self-inquiry, I know better now.
- After losing our son 21yrs ago at just 20 days old, he never got to come home. Instead, he lived those 20 days in 3 different hospitals & in 2 states. I wanted to scream & throat punch every person who told me, “Well, God just needed more soldiers.” ” God must have needed him more.” “Well, be happy for the time you had him with you.. (pardon me?)” “Well, it just wasn’t his time. (WTF?!) There were many other things said & done too, but these are the ones I remember & hated the most. I was raised a Christian and always believed, although my beliefs aren’t strong these days. I now consider myself to be more spiritual…I was seriously irate at God for a long f-ing time.
- It’s not so much what someone says or doesn’t say, as how much fear or acceptance they bring. It is overwhelming to deal with someone else’s fear when you are in need. I have learned to be selective with what I share with others. It’s not that I think I can do it all alone, but when someone is not able to offer spaciousness and hope, it can be too dark to manage. However, shrill hope is equally painful when you are suffering.
- When I went back to school after my mother died (I was 6 years old), the teachers didn’t talk to me about what I was feeling. One said: “Stiff upper lip.”
The Difference Between Fixing, Helping & Serving
In my new book Sacred Medicine, I quoted an excerpt from a transcript of a lecture Rachel gave about the difference between fixing, helping, and serving. You can read the whole transcript here. What I heard from the crowd-sourced answers- and from Rachel’s wisdom- is that surgeries and drugs may fix or help, but only service heals.
In Healing With The Muse, we’re trying not to fix or help too much but to gather in community to serve each other’s healing journey, learn about ways to understand, gain insight, and treat trauma, and let our muses write, sing, dance, and otherwise alchemize whatever is in need of healing into connection, art, and gold. We welcome you for our next session about how to find the delicate balance between vulnerability and vulnerability hangovers here. We’re also doing our darndest to get Heal At Lost, our non-profit program intended to bring trauma healing and spiritual healing to anyone who identifies as being in recovery from illness, injury or trauma, off the ground. We’re talking to folks at Harvard and other movers and shakers. We’ve gotten our first grant before we’ve started fund-raising, and I’m actively working on the training manual for group leaders so we can serve those in need who might not have the resources to take advantage of many of the cash-pay-only resources in Sacred Medicine. You can get on our mailing list at HealAtLast.org if you’d like to get into a healing circle, lead one, or donate to support the project.