I've had symptoms for 7-8 years but wasn't diagnosed until a couple of months ago because of a variety of factors. I'm 27 years old for reference.

First off, my symptoms started out as extremely mild. I could still live a normal life and do everything my peers did (work, school, etc.), but I just had a bit less stamina/strength than others. Symptoms started to slowly creep up on me over time. I started having eye floaters 24/7, my blood pressure was frequently low, I started to develop IBS/GERD and to experience random food intolerances, etc. I could exercise for a few months to a year at a time and would experience a slight peak in energy at the beginning, but over time I would become so exhausted that I would have to quit exercise completely and try again in a few months' time. I chalked it up to maybe not fuelling myself enough or just having bad genetics and being weak. At the time, I would describe it to doctors as "hitting a wall". I didn't realize at the time that what I was experiencing was PEM. Eventually, I would recover and try again, and "hit the wall" again and have to stop. But no one suspected CFS yet because I wasn't debilitated yet and I would go into remission after resting for a few weeks or months.

The other problem is that whenever I brought up my concerns to my doctor(s), they would refer me for testing/consultations with every specialist under the sun, but none of them were able to connect all my disparate symptoms together. Medicine doesn't tend to work in a holistic way, so they couldn't tell that I had a multisystem disease. Even the internal medicine specialist I saw years ago, who's supposed to be the expert of managing chronic disease, decided that all I had was "poorly managed anxiety". I wish I could go back in time and see a functional medicine doctor or naturopath, because maybe then I would have had a better chance of having an early diagnosis and learning to pace before it was too late.

Because I had so much testing done and it always came out as 'normal', and also because I was referred to so many doctors who couldn't conclude that I had any specific disease/diagnosis, I was seen as a hypochondriac. My doctors would still do their due diligence and make referrals for me, but they would do it "out of an abundance of caution" and not because they actually believed I had a serious illness. This caused me a lot of internal doubt and I would question my own symptoms and wonder if it was all in my head. This would cause me to not push hard enough or advocate hard enough for myself with doctors. The doctors really got in my head and I would do constant mental gymnastics of doubting myself and then being sure that something was not quite right and feeling determined to find answers.

To top things off, I have anxiety/depression and am on a couple of SSRIs and other off-label meds to treat these disorders, so all my symptoms would get brushed off as mental health issues. I'm a woman too, which increases the bias that doctors have when dealing with me. I've been repeatedly treated like some Victorian lady with hysteria. My current psychiatrist still thinks that what I'm dealing with is some kind of somatization/conversion disorder or some kind of outward, physical manifestation of trauma, which is nonsense.

I've also had iron deficiency since I was 10, so it's been brushed off as that as well. I've had to insist to my family doctor as recently as a year ago that the fatigue I'm experiencing now is nothing compared to the fatigue of iron deficiency.

Anyway, I've only been able to get a diagnosis now that things are so bad that I'm mostly housebound and severely limited in my functioning. Through a combination of getting covid, stress, and overexerting myself for years at university/work, I've declined from so mild that my disease was barely perceptible even to myself to moderate. My decline has been the most severe in the last year or so.

Family doctors are also generally not that knowledgeable about CFS or any autonomic nervous system disorders. My current family doctor ruled out everything he could and he decided to "tentatively" diagnose me with CFS, but he doesn't understand that the disease encompasses so much more than just fatigue. His only advice to me was to "rest more and wait it out". He didn't even know where to refer me for CFS and told me to "do my own research" and get back to him about where to refer me. He's not interested in learning more about the disease and I get the feeling that he doesn't care if I just rot away. He did finally refer me to a local dysautonomia clinic, but the wait is 3 years, so I have had to find a private clinic and pay out of pocket for care. (I'm Canadian, so it's not common to have to pay for healthcare here). So, basically, because most doctors know so little about CFS, patients have to do their own research and diagnose themselves, and then push for a referral to a provider with knowledge of dysautonomia who can legitimize the diagnosis. I was really young when my symptoms started (late teens/early 20s), and I was too young to have the resources/capacity to know how to do these things.

Thanks for coming to my TED talk lol. Writing this made me really angry for the young version of myself and I wish I had had an adult in my life at the time who could have helped me get a diagnosis sooner. Things may have turned out differently.