I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) in October of 2006. I was one of the lucky few who was diagnosed within six months of the initial symptoms, and it was only because the doctor I saw for a second opinion had personal experience with it when his daughter fell ill with an unknown virus and never fully recovered.
It’s assumed that the virus that triggered my ME/CFS was Epstein-Barr (EBV), which is the virus that causes glandular fever (mononucleosis). I had caught it from my then boyfriend, who I had gone to visit for the weekend despite knowing he had some kind of mild bug. But it was autumn, and my immune system handled working in the only supermarket in town just fine. What was a weekend with my boyfriend gonna do? Ruin my entire life?! No way.
This was the attitude I kept carrying in the days following the visit. I did get sick, but the illness was so mild that I didn’t see the need to take time off work. I wasn’t coughing or sneezing, and if I had a fever at any point, I never noticed it. My throat was scratchy, and I had a small amount of pain around the spleen area, but it was totally manageable.
It wasn’t until a few weeks later that I figured out that something was wrong. The scratchy throat never went away (but was and still is thankfully mild), I struggled to finish my shifts at work without extreme fatigue, and I was spending a lot of time sleeping. I thought that maybe my depression had returned, but I didn’t have any reason to be depressed. I was actually doing really well, working towards saving money for university, and I had a great social life.
My GP at the time was very old school. I wouldn’t say that she was dismissive, but it was really hard to get her to consider the fact that I had already searched within myself to figure out if it was just depression and look into possible physical causes. Even after my blood tests reveals a previous EBV infection, she didn’t tell me this, and put me back on antidepressants as treatment.
By the end of September, I was entirely bedbound when I wasn’t working. I stopped visiting my boyfriend (who developed a drinking habit) and only had contact with my friends via the internet and text messages. I knew in my heart that it was a physical barrier that was causing this, but of course, the whole situation did cause me to become depressed. But I was on antidepressants, so like… how even, right?!
This is what made me seek the second opinion. The doctor almost immediately asked if I had a viral infection in the past six months. I said “I don’t think so…”, but when he pulled up my file, he saw that I had been tested for and was positive for EBV antibodies. He did say that they cannot tell how old they are, but it all clicked into place after that. I’d been struggling ever since that weekend. That mild illness I thought was an entirely “normal” scratchy throat in autumn while working in a supermarket was likely EBV.
And I had likely completely screwed myself over by working through it.
Back in 2006, the pushback against graded exercise therapy (GET) hadn’t been what it is today, so when the doctor recommended it in combination with elimination dieting, I didn’t question it. I was pushing my body past its limits while also eating like an absolute dickhead to figure out how to get better. I’m sure this is what put my body into a permanent state of what can only be described as fuckery.
Because I had to take more than a few shifts off leading up to Christmas, I had been threatened with termination from work. Not wanting that on my record, I quit. I was able to get another job at a supermarket in another town. They had a reputation for hiring disabled and young people, so they were happy to accommodate me, but by February 2007, I had become too ill to work.
Somewhere amongst all of this, I had also broken up with my boyfriend.
It’s been 17 years since I fell ill. I’ve never recovered, but I’ve thankfully never been as bad as I was in the first few months. Not even after the COVID infection I got in March of this year which did knock me back a little and give me new symptoms. For this, I actually feel really grateful. I am at a level of functioning which means I can still enjoy life, but I can’t fully participate. A lot of people with ME/CFS don’t have that.
If you are reading this as someone who thinks they may have ME/CFS or are in the diagnosis process, here are a few things I think you should know:
- The chances of recovery are unfortunately slim. Work on acceptance as soon as possible. Even if you DO recover, it’s better to have accepted being disabled earlier on in the piece. Trust me on this one! It gets harder to “deal with it” when you’ve gotten into the habit of not dealing with it.
- Learn how to pace and listen to your body. Try not to do too much when you’re having a good day, even if you feel like you absolutely need to get it done. Prioritise the stuff that needs to be done first and then everything else can go fuck itself if need be.
- Do not agree to graded exercise therapy (GET). It will likely just make things worse. Also, unless you have a bad diet already or severe gastrointestinal symptoms, be careful with trying different diets. Certain diets can also make things worse. Balanced and supplemented if needed is best!
- Get a second opinion. If you don’t feel as though your doctor is taking you seriously or the treatment options they’ve offered don’t work, see someone else. Even better is if you can find someone who knows about ME/CFS. You shouldn’t need to rely so much on luck like I did these days.
- The people you lose during this journey were never worth it in the first place. Try not to let them bailing on you affect your mental health because you need that to keep battling this bastard of an illness.
- Only you really know how you’re feeling. Don’t get too upset when your loved ones who do stick it out with you act like they forgot you have a chronic illness and expect something from you that you just can’t manage at that point in time.
- Figure out if you have ADHD. This may be super specific, but after finding out that I had ADHD all along, I often wonder if it was a contributing factor to how I ended up chronically ill from a common and mild viral infection. If you know you have ADHD and can get it treated, your outcome might be a lot better than mine!