How I went from being a healthy individual to being diagnosed as chronically ill with ME/CFS after years of fighting disbelieve and prejudice of medical professionals.

A series of respiratory infections I never recovered from

I can’t pinpoint exactly when I got sick, but somewhen 2015/2016 I got sick and never recovered. I can’t say exactly when, since I never got so sick that I needed to be hospitalized or couldn’t leave the bed at all. What I experienced back then was a series of respiratory infections that left me with fatigue and dizziness even after the coughing and sneezing was over. I went in and out of sick leave, doctors prescribed coldness medicine in the beginning, recommended resting first and recommended exercising when resting doesn’t cure me.

What you need to know at that point is, that I have always been a very sporty person – I worked a physically intensive job and did weight-lifting. Besides, I went cycling and inline-skating and partying on weekends. I tried to do sports again, not only because doctors recommended it, but because I was desperate to feel alive again. Every time I just did mild exercises, my body sent my back to bed for weeks. Working for some hours needed me to recover for days.

Fatigued, feverish, difficulties doing simple tasks

I quit my job and tried to do less physical work. Evenings and almost every weekend I spent curled up under a heated blanket, which was the only place I felt somewhat comfortable. Back then my main symptoms were constant dizziness, fatigue and I felt like I couldn’t uphold my body temperature and everything was too cold. Doctors told me it is probably psychosomatic, that everyone feels tired or catches a cold once in a while and that I need more discipline and willpower.

It’s all in your mind!

In 2017 I got diagnosed with Hashimoto Thyroiditis, an autoimmune condition destroying my thyroid. I was prescribed thyroid hormones, got a bit better, but not nearly to a level I’d have described as fit and healthy. Treatments for multiple vitamin & mineral deficiencies were following and not changing much, so doctors conclusion were that it’s „all in my mind“ and they can’t help with that.

I struggled through the next years with constant headaches, diffuse body pain, heavy fatigue, and getting struck down for weeks to months from common respiratory infections, wondering how other people could just sneeze for 3 days and be well again, let alone still work and exercise?

Myalgic encephalomyelitis - There’s a name for it.

2020 my lack of willpower and discipline got diagnosed as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) with mast cell activation disease (you could describe it as an aggressive form of histamine intolerance, short MCAS) and postural tachycardia (too fast heartrate when changing from lying position to standing or even just sitting, short POTS) as co-morbidities (=conditions that often accompany other conditions).

Same as many people affected by both ME/CFS and Hashimoto, the Epstein-Barr-Virus (EBV), that causes mononucleosis, showed up on my bloodwork, but I can’t say for sure if that was the starting point of my journey, because it wasn’t caught in it’s initial phase.

No cure, but symptomatic treatment

Besides all those conditions being largely uncurable, there are ways to lessen symptoms, therefor diagnosis is still important, even for uncurable conditions! Also, it was tremendously important for my mental health to get diagnosed as ANYTHING since it meant finally getting taken seriously and not getting the eye-rolling-treatment.

I hope for all other chronic illness warriors out there to find the endurance and strength it takes to not only fight the symptoms of debilitating illnesses but also the disbelieve and ridiculing on needs to deal with when falling ill with an invisible illness.

Stay as strong as you can and don’t give up =)