23 Years….. 23 Years I’ve Been Battling This….

23 years … 23 years of pain… 23 years of being told by many that it was “all in your head” … 23 years of limitations in how I live my life … 23 years, most of which I avoided forming new relationships because so many people got angry when plans got canceled when I just couldn’t function on that day … 23 years of choosing not to marry and have kids because we didn’t know what caused this and as miserable as I was I wasn’t willing to risk passing this cursed source of pain and illness on to anyone else.


They’ve known for a long time that people with CFIDS have a higher risk of developing certain types of cancer … and the virus they now think causes the CFIDS is also being linked to cancers … so it makes perfect sense that it’s related.

I just spent about 2 hours on the phone telling people about this and crying … after 23 years of dealing with this, the news that they may have found the cause … I cannot even describe how that feels …

In 1986 when I got sick, I was taking professional level dance classes, running 3 miles every morning and going out dancing with friends most nights. Within the space of 2 days I went from running my 3 miles in the morning to having trouble walking to the corner and being in horrible pain pretty much from head to toe. In 1997 I herniated a disc… and didn’t know it until months later when I started falling down … why? Because it simply did not hurt that much more than the rest of my body did … the doctor who diagnosed the herniated disc told me I SHOULD have been on a stretcher screaming when I did the damage … and he couldn’t believe I had been walking around like that for months and had walked into his office, instead of being carried into an emergency room … when I told him it didn’t hurt that much more than the rest of my body, he was horrified … said he knew CFIDS was supposed to be painful, but he had no idea it was that level of pain … My response? “now you know”.

On a really bad pain day, it feels like a million pacman chompers have been let loose on my nervous system… and the little white dots they thrive on are my nerve endings … 23 years of that.

23 years of waking up each morning, assessing my pain level for the day (it varies greatly), and then saying “hello pain, get the hell out of my way” and starting my day. 23 years of having a list of things I want to do that day, and waking up not knowing if I’ll be able to accomplish ANY of them. 23 years of convincing myself that pain is just “physical white noise” and I don’t have to listen to it, in order to be able to function.

And now they may finally have a clue as to what causes this … and that small glimmer of hope has me a basket case at the moment.

If they really do have a more widely available test in a few weeks … I want to be one of the first ones to take it.

How I feel in this moment is how I felt when I was finally diagnosed … after YEARS of doctors telling me it was “all in your head” and being treated like a lunatic for being sick … the doctor who ran tons of blood work and tests and then looked me in the face across his desk and said “the first thing you need to know is this is not all in your head, you have a physical illness” … I just started sobbing … unfortunately it was followed with “unfortunately we don’t know what causes it, and there is no real treatment at this time” … which was not really helpful, but at least someone was taking it seriously.

But now there’s at least a reason for hope that the rest of the puzzle may be being figured out. How freaking cool is THAT!?!?!

I’ll never get those years back, but maybe I don’t have to lose so many going forward.


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