Chronic illness burnout is real and we need more research
Chronic illness burnout is real and we need more research
There is a lot of research about burnout among doctors and health care workers but not a lot about burnout in patients living with a chronic illness.
I got my blood test results back the other day and I fell into a dark hole. I’ve taken IV magnesium drips for eight years now and my magnesium levels are as low as they have ever been. I felt exhausted, depressed and burnt out. All those years of several IVs a week and it’s gotten worse.
I constantly live with a low-grade burnout as I’ve lived with severe chronic illness for many years now, but this triggered a bigger version of burnout. I wanted it all to go away.
Patient burnout is a state of exhaustion, frustration, and disillusionment experienced by those of us who have been dealing with chronic illness, navigating complex medical systems, or undergoing prolonged medical treatments for a long time. It can manifest as emotional, physical, and mental fatigue, leading to decreased motivation, dissatisfaction, and a sense of hopelessness and despair.
My mental reaction to burnout is: “Nothing I do matters!” It’s a feeling of being out of control, a feeling of hopelessness and despair, of having no agency, and like the universe is conspiring against me. “Where’s the help!” I hear myself shouting inside my mind. While I have great doctors, there’s not much they can do other than continue my drips. Funding of illnesses primarily affecting women is abysmal, and there’s too little we know about women’s bodies.
I yearn for this problem to be fixed for good. I have a catheter that goes into a vein in my heart and the risk of infection is always hanging over me. On top of that, the skin around my catheter won’t heal and it reacts to the catheter, which means it stings. Last time it got so bad I had to have it removed and a new one put in, which meant a three-day hospital stay and surgery. It took me months to recover and it’s painful being out of my own environment where I’m in control of most things like temperature, moisture in the air and how much light and sound comes in.
While I am incredibly grateful for this catheter, and for the magnesium drips, I’m also tired of them. I get them three times a week now and the visit from the nurses (while great fun) wipes me out for the day.
There is a lot of research about burnout among doctors and health care workers but not a lot about burnout in patients living with a chronic illness. So all we know about it is from personal and lived experience. We need more research on patient burnout.
But from my own, and other patients’ experience I can say that living with chronic illness is a fulltime job and we don’t get to take breaks or go on relaxing vacations from our body. A lot of the treatments we take are often for maintenance and not recovery. Experiencing no or little progress, while working so hard, can be exhausting.
Chronic illness burnout can manifest as wanting to give up treatments or not wanting to try new ones, feeling spiritually and psychologically exhausted and can’t see a way through or feeling cynical about your body or skipping medical appointments.
A lot of us have also experienced being dismissed or mistreated in the medical system and going to the doctors now feels like a battle.
Chronic illness burnout can stem from side effects from medication, treatments not working, being dismissed or mistreated by healthcare workers, navigating medical systems on your own, debt or other financial difficulty, as well as performing daily tasks with a body that hurts.
If we had more research about chronic illness burnout and doctors and other medical personnel were aware of this and took it seriously it could factor into how we structure our health care. For example, healthcare could be structured so patients with multiple diagnoses don’t have to see several different doctors at different random places, but could see a team of doctors in one place. Or burnout could be addressed as part of a treatment plan.
The way I handle burnout is to go back into the present moment and tell myself that this is how it is right now. I also find that talking about it and venting with friends who themselves are chronically ill can be helpful. Knowing that I’m the only person experiencing this can be oddly uplifting.
Tell me…
Have you ever experienced chronic illness burnout? What was it like for you?
What did/do you do to manage chronic illness burnout?
What would you change about the health care system so patients avoid burnout?
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The trouble is, people want a narrative, don’t they? A story with a beginning, a middle and an end. Especially an end. It’s how we make sense of things, and engage in the collective delusion that the universe is a fair and orderly place. And for that reason, even the kindest people do lose interests in the endless, dull iterations of a chronic health condition with no obvious explanation or cure. We feel people ought to be smart enough to get better. I think maybe people were better at accepting open-ended illness when there was more of it about, doctors seemed less all-powerful and most people had some kind of belief in an afterlife that would make it all worthwhile. I’m reminded of the much loved girls’ stories of the 19th Century, of the final words of that desperate chapter in “Good WIves” - “Beth was well at last.” Or the somewhat irritating chronically sick Cousin Helen in “What Katy Did” who believed she had to keep learning the lessons of the “School of Pain” until she graduated and was finally free of it. Now we are less confident of the workings of Divine providence and tend to feel the suffering individual must somehow be to blame.
I’m sorry you’re feeling this way and I empathise with you completely. Living with chronic illness is definitely a full time job! On top of just existing and dealing with the symptoms, there’s the research into symptoms and diagnoses, trying anything and everything that could potentially help (and then dealing with the all-too-familiar disappointment and despair when nothing changes), attending endless doctor and hospital visits, keeping up with commitments to family and friends and employment (if able).
It is extremely frustrating that there is so little research into health conditions primarily affecting women - I’m in the process of reading ‘Unwell Women’ by Elinor Cleghorn but it’s taking me a long time to finish because I keep getting too angry! I agree with your suggestions - having your diagnoses monitoring and treated by a team of doctors in one place would be a lot easier to manage, for patients as well as health professionals. As patients, we would not have to travel to different doctors at various hospitals and we wouldn’t have to go through our whole story of symptoms and diagnoses at every appointment, which is demoralising and extremely exhausting. At the same time, doctors would already know the background information and treatment plan, so a lot of appointment time would be saved.
I’ve also lived with chronic conditions for several years, and I’m still learning how to manage chronic illness burnout. I find taking one day at a time can help. Also, getting outside and moving my body (on bad days, just simple stretches and opening the windows) can improve my mood a bit. I thought I had almost worked it out last year and was able to get out and at least go for a walk everyday, but I got an ear infection in December which set off all my conditions, and so now, I’m back to trying to claw my way out of despair and hopelessness.
Sorry for the overly long post - your article just really resonated with me! Sending compassion and gentle hugs