I’m currently reading “The Lady’s Handbook for Her Mysterious Illness” a memoir by Sarah Ramey. Nearly every page rings true for me.
- Weird symptoms for 10+ years that no one could find the source of.
- Shuffled from specialist to specialist only to have them shrug their shoulders.
- Firing three ob/gyns before I found one who didn’t try to make me take a drug that was the subject of many lawsuits.
- Not believed by doctors.
- Offered and refused antidepressants to help the symptoms that were “just in my head”.
- Trying every possible diet that promised to relieve mysterious symptoms.
- Turning to the internet gurus when doctors sent me away to try and understand my own body.
Sarah outlines her intense physical, emotional, and mental journey back to health. While it was harrowing, it gives me hope. There’s light at the end of the tunnel…it’s just a very long, twisty tunnel.
She notes that one of the most valuable aspects of moving toward healing is witness – being seen by others in a whole and complete way without agenda. She writes about how witness is desperately missing from our modern American medical system. The pressures of insurance companies and schedules mean we are often limited to 15 minute appointments with medical professionals. I can’t even tell you all of my symptoms in an hour, much less 15 minutes. Being quickly moved toward the check out with a few prescriptions in hand does not usually equal quality care. Chronic issues are brushed aside in favor of treating any symptom that might have a pill as a solution. The message is that the patient is not valuable, her symptoms not worthy, her body not important enough for our physicians to stop, listen, and bear witness to her pain. And please know, that I’m not faulting doctors – it’s a systemic problem and plenty of wonderful doctors, nurse practitioners, and PAs are caught in a trap that they have no power to change. I’m sure 15 minutes often doesn’t feel like enough to them either.
As I read about the need for witness in the life of what Sarah calls a WOMI (woman of mysterious illness), I was filled with gratitude for all the witnesses I have in my life.
- My medical team at Integrative Medicine of NC (always hour long appointments).
- Friends from all over the country who text just to tell me that I’m loved with no expectation of a reply.
- Those who ask how I’m feeling and aren’t afraid of the real answer.
- Family who listens to my symptoms without trying to fix it.
- Besties who proactively think about ways we can be social that don’t involve alcohol (my poor liver is going through a real experience in this detox!) or ways to connect that don’t require physical exertion on my part.
- And my 6 dear college roommates from our duplex on Caldwell St in Chapel Hill who rode into town last weekend from DC, Charlotte, Wilmington, and the Triangle and didn’t let me lift one finger to host them.
My Caldwell St girls are family. We’ve gathered every year since college at Labor Day but as families have grown we decided we needed a February weekend that was just the girls – no kids, no spouses. We did it in Feb 2020…then…well…we got back on track this year. They arrived with food in hand for dinner. They spent time packing and prepping 17 ziplock bags of mold diet compliant crock pot freezer meals (that’s like 100 individual meals!). They did a super woo woo (but AMAZING) Salt Cave and healing Sound Bath with me. They expected nothing but connection. No one offered me a wacko cure. No one doubted that I was in pain. No one questioned the validity of my unusual routine of saunas, baths, and trampolining. They came, they piled in guest rooms and on the floor and couches, they checked in on my pain regularly, and were ready to pivot plans at any moment if I needed. They bore witness to this strange chapter of my life. They let me bear witness to what is happening in theirs.
So many in my similar health situation have no one to bear witness. No friends or even spouses who believe them. No doctors who will dig deeper. No one who can sit with them in the discomfort and remind them they are not alone.
Sarah Ramey noted this quote from Henri Nouwen and it seems so right.
“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” – Henri Nouwen
I’m not sure how I got to be the luckiest mold patient ever. I’m not sure how I ended up with my best friends of 24 years filling up my house, my freezer, and my soul when I needed it most. I’m not sure how my local best friends don’t quit asking to hang out after the umpteenth time I’ve said I’m too fatigued. I’m not sure how my texts and inbox are full of messages telling me I’m seen and I’m loved.
But I am sure, without this witness, I would not be on a path toward health: a bumpy, pothole riddled path, but on the way nonetheless. The buoy of these witnesses is keeping me afloat, reminding me that I’m nowhere close to alone. The concept of bearing witness is well understood in the psychological community. Maybe, one day, there will be room for it in the medical community too.
How can you help?
- There are lots of products I need that can be gifted. Check out the amazon wish list here.
- Send me fun hobby ideas. I need distractions!
- Send me your best book recommendations or loan me your favorites.
- And of course, I welcome hilarious jokes, memes, or stories from your life. I hope friends will keep me laughing. Tell me what’s happening in your world! Don’t expect a call back – just know I’m deeply grateful to be connected to you.
3 thoughts on “Can I get a witness?”
We’ve been thinking about you and keeping up with you through your Aunt Em…
div>We hope the gift you receive from us tomorrow will help you
Thank you for the gift Susan! I’m so grateful for your generosity!
Yes! Yes! Yes! I’m so sorry you are on this roller coaster journey, but glad you are moving in a promising direction!! If you need anything, please let me know!!