Being Diagnosed with Myalgic Encephalomyelitis (ME/CFS)

I’ve had this blog for many years, and written so much about my life and my experience with chronic illness, but have never actually talked about being diagnosed with Myalgic encephalomyelitis (ME/CFS) and what that looked like.

I will be honest here, I was diagnosed nearly 10 years ago now so my memory is not great on the details, but I do remember the main bits which includes a lot of the really important stuff.

If you are undergoing testing, or about to start the process, this may give you an idea of what to expect. However, depending on where you are based, and who your doctor is, as well as the symptoms you are experiencing, your diagnosis process could be different to mine.

So let’s get into it.

No time to read now? Why not pin it for later?

Pinterest Pin - my journey to being diagnosed with Myalgic Encephalomyelitis

Where did it start?

So my journey to diagnosis actually started quite a few years in advance, when chronic illness was the last thing on my mind. I had just finished the first year of Uni, and it had been tough for me mentally (I was in the peak of depression, and found living independently for the first time a real struggle – maybe I’ll talk about that another time). I’d got through it though, and was spending the summer in my Uni town working to save up some money for the next year.

I felt rough pretty much all of the time, and to be honest I often put it down to depression and anxiety because they were impacting me every day. But I was really struggling at work, and wanted to see what else could be done. When I visited my doctor they suggested doing some tests to make sure everything was okay, as I was experiencing extreme tiredness at the time. They wanted to make sure it wasn’t just a result of depression.

My blood tests came back and showed that I had become anaemic, and was deficient in a lot of nutrients, including vitamin B12 which is often linked to fatigue. I left that day with a long list of supplements I needed to get to help me feel better, and I didn’t think too much of it.

That was the start, but it wouldn’t be another three years until I got an official diagnosis.

Mental Health makes it infinitely complicated

This may be a unique experience to me, but my mental health was a huge stumbling block in getting a diagnosis.

Chronic depression and anxiety are big cause of fatigue, particularly mental fatigue, which made it harder to determine the cause. When you are constantly ruminating, feeling low, having panic attacks, and pretty much running on empty, there is nothing left. Of course I was exhausted, my brain was in overdrive.

For the longest time, any complaints of tiredness, or anything similar, were just put down to my mental health. No further investigations were made, and I would be sent away with a higher dose of anti-depressants or new anxiolytics to try out.

Finally making progress

I won’t go into this too much, but because of my issues with my mental health I had to take a year out of Uni and then retake my second year. I was very lucky to be able to spend my year out living with my Dad and stepmum in Hong Kong, where they helped to support me and enabled me to recover somewhat.

It was an amazing experience, and one I am sure I will talk about more at some point. But the important bit was that this year helped heal a lot of the broken pieces inside me, and I returned to Uni not cured but at least more equipped to manage the depression and anxiety that had plagued me since childhood. And this in turn led to me being diagnosed with Myalgic encephalomyelitis (ME/CFS).

I made it through the year keeping on top of everything, and even found a great job at the students union that I loved. But one thing that never changed was the fatigue. I was drained, and no matter what I tried it didn’t get any better. Sleep wasn’t refreshing, I struggled with exercise or anything physical, and concentration was difficult in lectures and seminars. I was going into my final year of University, I really needed to be on form, so back to the doctors I went.

This time, because my mental health was more stable, there was a bit more to investigate. And this was the first time Myalgic encephalomyelitis (ME/CFS) was mentioned, but I didn’t take that as a serious suggestion – there was no way I had a chronic illness, I just needed some medication and I’d be fine. How naive I was, I’d been ill for years, how did I think it was going to be an easy fix?

No longer just vitamin deficiency – finally being diagnosed with Myalgic encephalomyelitis (ME/CFS)

The same blood tests were ordered, and in all honesty my expectations were low. Surely I’d just be sent away again with more supplements to reduce my tiredness – at that point that’s all I really thought it was to be honest. I’d never describe it as ‘tiredness’ now, because it’s so much more than that, but back then I did think I was just tired.

When everything came back normal this time, my doctor wasn’t really sure where to turn next. They investigated every potential cause of fatigue there was, short of anything invasive, and nothing was flagging up. They also checked once again that it wasn’t just my mental state causing it – which this time they were able to rule out.

And that was it. My doctor concluded there was no other explanation, I had no other illnesses, no deficiencies, nothing. All she could to do was label it Myalgic encephalomyelitis (ME/CFS), give me a printed copy of the NHS explanation of what it is, and prescribed me Fluoxetine (which is an anti-depressant that can be used to manage the symptoms, but I don’t think I ever felt any difference).

Included in this was the recommendation to try graded exercise therapy, which I am hoing this doctor no longer recommends as it has now been proven to be extremely harmful to people with ME, and furthers the rhetoric that we are just lazy when that could not be further from the truth. (NICE has also stopped recommending it as a treatment, but I know some physicians do still recommend it). Luckily this was not pushed on me though, and I didn’t really try it. All I wanted to do was get through my last year of Uni.

I am also very fortunate that as a psychology student, my department was VERY understanding, and made some really helpful accommodations to help me get through that final year and achieve my goal of getting a first class bachelors – which is still my proudest accomplishment to date.

What happened next?

After my diagnosis, not much in my life changed to be honest. I had no treatment plan, no cure, and once I decided to stop taking my fluoxetine I also had no medication.

I am still just as fatigued as I was then, actually even more so, and have developed a lot more of the symptoms than fatigue (if you want to read about some of these why not take a look). I’d love to sit here and tell you that my health got better, but I am still struggling quite a lot with my energy levels and I know that will continue for a very long time.

Despite this though I am very fortunate to have a good support system around me that makes things so much easier. Family and friends understand when I need to rest, and I’ve found a job that I love where my manager is really understanding. Not everyone has that, so I know I am very lucky.

I am still hopeful that one day I may be able to function like a ‘normal’ non-chronically ill person. But as we approach the ten year anniversary of my official diagnosis I know that it very likely not possible.

However, I do also have hope that there will eventually be advances into research on the topic, to find out what really triggers ME and hopefully find a cure. That would be great news for the 1.3 million in this country alone that suffer from it.