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“We shouldn’t be out of sight, out of mind” – Una, South Africa

(Content warning: medically assisted dying)

In 2020, during the Cape Town Pride parade, I collapsed, just half a block from the start. If I tried to stand up I would become dizzy, my heart rate would shoot way up, and I’d fall over. If I sat on the floor I could recover. It took us about an hour to move the quarter block back to the car. 

Looking back, symptoms started around my late teens. When I finally got a diagnosis, my doctor also found that I had a parasitic infection called bilharzia. Since I did a bit of hiking through rivers and swimming in dams as a Cub and Scout in my youth, that is likely where I picked it up. My dad had a bilharzia infection before I was born and it caused him major energy issues, so it’s likely my infection may have triggered my ME.

I remember in my early 20’s going to gym for a few weeks, then completely running out of energy for months. I spoke to my doctor about it but “the tests came back fine”. After a few rounds of this, that particular doctor suggested that I was just stressed and that I should come back to see him after hours. I promptly changed doctors. 

This carried on for years until in 2020 I saw Jen Brea’s documentary Unrest which gave me a name for the condition. My GP passed me on to a neurologist who refused to entertain the idea of ME because “then there is nothing we can do”. He wanted to reduce dosages of medications that were helping and didn’t even order any tests. That’s when I turned to the ME/CFS community to find a specialist.

I get a lot of silly questions from family who don’t read my detailed posts properly and just start asking about which treatments I’ve tried. They aren’t involved in my medical care but decide that they have an opinion at the 11th hour even though my partner and I have been living and breathing this stuff for the last 4-6 years. We’ve done the tests, we’ve read all the latest studies, we’ve even tried the drugs that are currently being trialled. I wish doctors knew more about the condition than us and we could spend our energy on other things rather than having to manage it ourselves.  

My partner has been an absolute champ and has read everything she could get her hands on ME-wise. Without her I wouldn’t have got this far. Unfortunately she now has Long COVID after my mom brought a nasty new variant with her when she visited last year.

I’m proud that we have been able to get a hold of friends and friends of friends who have been diagnosed with Long Covid or ME and give them the rundown on what to expect and how to manage the condition in order to not get worse at an accelerating rate. 

Before my condition made it into the Moderate to Severe range, I was a rather active person in my local communities. My partner and I are both Trans Women, Bisexual and Polyamorous, so we did a fair bit of advocacy and education work in the LGBTQ arena. I was also crowned Ms SA Leather in 2017/18. To be honest, when I came out as trans, I was surprised about how much support I actually had. The most hassles come with chronic illness.

I spent 20 years working in the IT industry but eventually had to stop because I couldn’t keep up with the volume of work being demanded of me. Unfortunately since we only managed to get a diagnosis nearly a year and a half after I was forced to leave, I had no medical boarding like some folks. 

No job is worth your health. I probably worked for a year or two beyond the point that I should have. I was raised to be fairly independent so the thought of not working and relying on my partner for financial support was difficult for me. So difficult that I had to get to the point of needing to make the decision to jump off the roof or go home, before I would take my partner’s support. During that time I was burning myself out, making my condition worse. 

Between IV treatments and medication, I got back some of my energy but I still spend probably 85% of my time in bed. I am able to get myself to the toilet still, but I barely have the energy to shower once a week. In the first half of last year I could browse the internet and sometimes play computer games. But lately I’ve been sleeping a lot during the day, then watching some TV in the evening, then going back to sleep. My migraines are getting closer together. And I’m starting to have more severe stomach/digestive issues.

I’ve always been a lifelong learner. I am a licenced Ham Radio operator and used to attend as many Ham radio events as we could. In 2019 after I stopped working I did a course in video content creation and another in photography. I dabbled in programming, and enjoyed entering hacking competitions.

Unfortunately most of these things fell by the wayside when I became Severe. My long and short term memory is affected and the more energy I use, the worse it gets. This makes learning new things really difficult and remembering old things exhausting. As a movie buff, it really bothers me that I can only remember maybe the first 20 minutes of many movies I’ve watched over the past few years.

This has probably been my greatest loss as without our memories, who are we? And if we cannot learn new things, how can we evolve and become better people?

Simply put, things are getting worse and there is no cure or really effective treatment for this condition beyond what I’ve already tried. In our extensive searching for info on ME/CFS we learned just how bad this condition can get. The Very Severe people like Whitney Dafoe, who cannot speak or listen to another human voice without risking seizures, have to be fed via a j-tube as they are unable to feed themselves. 

I have already lost the ability to pursue just about every hobby, passion and pleasure in my life. I do not want to live out my last days unable to tell my loved ones how much they mean to me. I therefore plan on travelling to Switzerland to make use of their Medical Assistance in Dying service in mid-May 2024.

This has not been an easy decision. There is so much more I wanted to do. Places I wanted to see. Things I wanted to create and try out. But without a working brain and body, that’s really difficult. Anyone who knows me well enough knows that I’ve thought about this long and hard and I know it’s the right decision for me.

As a #GlobalVoiceForME, I would like to say to the world’s health authorities that ME/CFS is a real condition. It is turning people into shadows of their former selves and no one seems to care because no one sees us, sick and alone, at home in our beds. We shouldn’t be out of sight, out of mind. With the numbers of Long Covid patients looking like 10-30% of those infected by COVID-19, and half of them developing full-blown ME, that’s a very large portion of the human race just to give up on. Those people could be the next Einstein, Mozart, DaVinci or Chis Barnard, but they will never live up to their potential if we never find a cure.

#GlobalVoiceForME Una Alexia Karlsen

To answer the questions took Una two hours, with a longer recovery time because it was more emotionally draining than she expected.