Why Medicine is Failing Long Haulers (And How We Can Create Meaningful Change)
I just had a lively conversation with Dr. Emily Mendenhall for the Long Covid Hope Podcast, and to be honest, it’s lit some fire under my feet. You can watch the full interview video here on Youtube, or listen to the audio edition on your preferred podcast client.
If you’ve been living with Long Covid or another chronic condition, you know the routine: the endless referrals, the ‘normal’ blood tests that feel like a slap in the face, and that subtle, sinking feeling when a doctor suggests your symptoms might be ‘stress-related’.
In her new book Invisible Illness: A History, from Hysteria to Long COVID and her recent article for Science Politics, Emily Mendenhall pulls back the curtain on why this happens. It isn’t just a lack of funding or a "new" virus. It’s a outdated, patriarchal and as she describes it “misogynistic” culture of medicine that is fundamentally failing all of us.
The Legacy of Hysteria
We talked about the "power of naming." Emily traces a straight line from the Victorian-era diagnosis of ‘hysteria’ (which actually stems back from Hippocrates and literally translates as “uterus”) to modern undermining labels like the dreaded ‘FND’ (‘Functional Neurological Disorder’). Whenever medicine can’t easily find - or bother to find - a physical source or a biomarker - a ‘smoking gun’ in a blood test - it often defaults to psychologising the patient.
This is a systemic bias that disproportionately affects women and people of colour. As Emily says, "COVID is the lighter fluid", but the fire is burning through a medical system that wasn't designed to handle complexity, nuance, or patients who don't fit into a neat diagnostic box.
The Switchboard Problem
One of the most powerful points Emily makes in her book, is that current Long Covid clinics often act as "switchboards." They connect you to twenty different specialists - one for your heart, one for your gut, one for your brain - but nobody is looking at you as a whole person.
This wild goose chase of siloed and unsupportive traditional Western medicine doesn't just fail to heal us, it causes further exhaustion and depletion. For a Long Hauler or someone with ME/CFS, the energy required just to get to the hospital is often more than we have in a day for all activities. The system as it is currently running is built to fail us, when we need it the most.
Reimagining the Future
So, where is the hope? My favoutite passage in Invisible Illness - which caused some lively discussion in the podcast interview - is the section where Emily imagines a different reality of clinics that blend medicine with holistic therapies and many avenues of support. She states:
“I imagined what a rehabilitation facility for those living with a complex chronic condition like chronic Lyme, ME/CFS, or Long Covid might look like. I imagined quiet rooms for meditation, steam rooms, sound therapy and massage, strength training for small subtle movements, and a warm pool for reimagining wht it feels like to move freely again.'“ (pp. 166-167, Invisible Illness)
Emily and her colleague Dr. Alba Azola argue in their recent article that “There is no need to start from scratch. However, there is every need to change the status quo.” They state that we need:
Holistic Healers: Clinicians who can sit, listen, and manage multisystemic symptoms in one place.
Validation as Treatment: Recognizing that being believed is the first step toward the body’s calming and healing phase.
Social Support as Medicine: Safe housing, transportation, and disability support should be seen as ‘insurable treatments,’ not afterthoughts.
How You Can Help
I started the Long Covid Hope Podcast because I refused to let our stories remain invisible - and I wanted to share alternative visions which argues that recovery is possible and achievable. After talking to Emily, I realize that these podcast interviews aren't just for comfort or to share wisdom between fellow long haulers, it could actually be some fuel onto the fire of a much-needed medical revolution! Do you agree??
We are not just patients - we are the experts of our own experience. It’s time the system caught up.
Here is how you can help move the needle today:
Share Your Narrative: The medical system values data, but as Emily shows, narratives change culture. When you share your story - whether on social media, with your representative, or in our community - you are providing "lived expertise" that challenges the status quo. If you have a more hopeful story of Long Covid, I’d love to have you on the podcast for Season 5. Get in touch if you’re interested!
Refuse the ‘Hysteria’ Label and refuse to be gaslit any longer!: The next time a clinician tells you "good news: all the tests are normal," remember Emily’s research. Use the language of complex chronic illness. Remind them that a lack of a biomarker is a failure of current technology, not a failure of your body. Emily suggests in the interview to actually purchase a copy of Invisible Illness for your doctor to read - and I wholeheartedly agree!
Listen and Subscribe: Tune into the full interview with Emily Mendenhall about Invisible Illness. We dive deep into how we can turn this "invisible" history into a visible, hopeful future and things get rather passionate!
Support Systemic Advocacy: We need to move beyond awareness and toward major policy changes. Support organizations that are fighting for clinics to be funded as integrative, multi-specialty hubs rather than referral switchboards. If you are someone who are able to implement this sort of cultural change, let’s begin! I’m more than happy to supply the meditation and yoga part of the treatment plans.
How I Can Help!
Obviously I am the host of the Long Covid Hope Podcast and the founder of ‘Yoga for Long Covid’. I’m going to make a pledge here to continue this work and support for all Long Haulers and folks with chronic health conditions everywhere. As part of this mission, I am opening up most of my ‘Yoga for Long Covid’ and ‘Restorative Healing Yoga’ for everyone to use for free on my Youtube channel. Subscribe, Like, Comment and make a donation to support the cause if you’d like! The next season of the Hope Pod - Season 5 - is beginning to get planned, and of course, I offer ad-hoc 1-1 Sessions here, as well as my Healing and Wellness Mentorship Programme.
