What risks would you take if you were only able to function for one, maybe two hours a day? The rest of the day, you must lie down with an eye mask on while listening to something quiet. You can’t work, exercise or drive. You can’t leave the house for more than an hour or two once a week.
Would you risk an increased chance of skin cancer? Or possible vision damage and blindness?
I would. I am.
Many years ago, I woke up one morning unable to move my body from my bed. It felt like a tonne of wet cement had been poured on top of me and I couldn’t shift it. I struggled to answer questions, read, remember things and connect ideas. Getting myself up or out of the house to work became an extreme sport.
After eight years visiting doctor after doctor, I was diagnosed with a disease known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME).
ME has no treatment or cure. Millions of people are joining this cohort via long COVID, which shares striking similarities with ME. Both patients and doctors are in a murky world of unknowns.
But I am one of the lucky ones: I’ve become a human experiment.
If there’s a chance a treatment could increase my capacity so I can work, or drive, or socialise independently again, I will try it. When you’re trapped with a debilitating illness, any different feeling can be a welcome relief.
What does life as a ‘lab rat’ look like?
I experiment with different medications under the guidance of trusted medical professionals. As I see it, medication is technology. Why wouldn’t I use technology to try and improve my quality of life? That’s not to say it’s a simple — or easy — process.
For years, I was shunted between different doctors for extensive, expensive tests. They couldn’t find anything that medicine had a treatment for. I tried lifestyle changes and alternative therapies to no avail. Finally, I decided it was time to experiment.
I was referred to a specialist with an interest in ME and, when I asked him whether there was anything we could try to “improve my capacity”, he was up for the challenge. Each appointment, we discuss different medications we have heard of in the ME space (all are designed to treat other illnesses). Together, we weigh their potential risks and benefits.
My specialist reviews my bloods and decides whether a particular medication is appropriate for me to trial and at what dosage. Each time he says: “We have no idea what will happen and there are no guarantees”, and I ask about potential side effects to monitor for and hazards to avoid. We discuss how expensive the medication is and where I can find it. Then we monitor my body’s response.
This morning, I took nine pills. Three of them are “private non-PBS prescription”, which means they are expensive and untested for treating my illness. Four of the pills slightly increase my brain function — to the extent that I wouldn’t be able to write this without them — but neither my doctor or I know why.
Some medication trials have been ineffective. One drug caused my vision to blur so I couldn’t see or read. My specialist at the time advised me to “wait it out” but I decided to pull the pin. Years later, the same medication would end up helping me, I just have to get regular eye tests.
Misery… and life-changing gains
Some of the medication has suppressed my immune system and made me vulnerable to dangerous viruses. Some have caused headaches, gut infections, skin infections, staph infections, anxiety, mood swings, drenching night sweats, constipation, diarrhoea, vertigo, twitching, itching… the list goes on. Many of the medications cause nausea. Sometimes it’s manageable, sometimes it’s miserable.
These technologies have a way to go. But on my current regime, I can get up and shower (with my shower seat) most days. Sometimes I can write. If I have notice for a big event with loved ones, I can socialise and recover. For me, these are life changing gains.
In an ideal world, though, these medications would be properly tested in controlled studies rather than on very sick people.
Some disabilities are “over medicalised”. Disabilities are often seen as medical problems when many really arise from a lack of accessibility. As Dylan Alcott recently explained, when he is in an accessible space, he is not disabled. It is inaccessible spaces that disable him. This is the social model of disability.
Inaccessibility disables me, too — stairs and lack of seating or rest areas limit my capacity to move through the world and participate in society. But I am also disabled by a lack of medical attention, research and funding for my disease. In my experience, the thing that most disables people with energy limiting chronic illnesses like ME and long COVID is that governments, medical funding bodies and scientific research communities do not see the problem.
Diseases affecting women receive less focus and funding
Perhaps one of the reasons for this lack of focus and funding is because most ME patients are women. Diseases predominantly affecting women receive significantly less research funding. This means women and gender diverse people’s bodies are still poorly understood in medicine.
Shockingly, female animals and humans were excluded from medical testing until very recently. Women have been prescribed drugs for decades without them having been tested on female bodies.
This lack of knowledge is compounded by the incentive for doctors to provide short consults, limiting the potential for women’s complex illnesses to be properly treated. Together, these factors result in doctors too often distrusting women and gender diverse people’s accounts of their own bodies.
Millions of people globally, up to 80 per cent of them women, present to doctors with the debilitating symptoms of ME. Some doctors tell us to rest or lose weight or see a psychologist. An infectious diseases specialist smiled at me indulgently and suggested I was “just tired” because of my work as a lawyer. One senior immunologist said I would “probably” get better because I was not obese and had a positive attitude; there was “no need” for a further appointment.
Both were wrong because ME is a complex neuro-immune disease. I haven’t worked as a lawyer since 2014 and though my optimism has survived, so too has my disease.
Funding is urgently needed for research into ME so that one day when I, and millions of others, go to the doctor, they are not only able tell me what’s wrong, but how they can treat it. Instead of saying “we don’t know what will happen”, they can say “this should give you some relief”.
For more information about ME click here. To support homegrown research into ME check out the National Centre for Neuroimmunology and Emerging Diseases at Griffith University.
Alice Rumble is a disabled writer and advocate living with ME. She shares her stories of disability on Instagram at @alice_rumble.
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