Bringing Awareness To An Invisible Disease
The earliest I remember excruciating pain was about the age of three. Yup - you read that right. Three. Think about that being your earliest memory. Screaming pain shooting from your feet and cramps running up your legs. I remember getting to my Mom’s bed, who started messaging my legs. I can only imagine my Mom’s heart break when there was nothing she could do to comfort her daughter.
From here, I was taken to what feels like 100’s of doctors appointments, child specialists, Children’s Hospitals, and was told over and over again - they couldn’t find anything wrong ... must be growing pains ... must be anything /something else.
From there I became a teenager - exhaustion - think sleeping through Christmas and family events because I was so exhausted I just couldn’t stay awake. Doctors said “Loose some weight. Just a teenager - she’s moody - it’s normal - tell her not to do so many activities.”
In my twenties when the pain was rocketing, I was constantly sick, and then depression kicked in - they doctors said “you’re over weight, you’re over extended, you’re in school, you’re depressed - take these drugs they will help.” Not so quietly they were telling my parents in the other room that I was a depressed drug addict (I SO wasn’t into drugs - I wasn’t even really depressed, not that there hasn’t been times I have been - I was just stressed due to the pain) and that they should consider pulling me out of school and getting me help. They did - I did - but that didn’t help my back that couldn’t move, the stiffness that wouldn’t go away - and the inflammation that wouldn’t be helped.
Still I suffered.
In my 30’s I met my husband who wouldn’t let doctors push me around - that helped me push back. I had an employer who took the time to get to know me - and helped me vocalize the issues all together. And then I FINALLY got someone to listen and got my diagnosis.
But also the bad news.
I don’t have cancer - but incurable multiple diagnosis of diseases that have no cure, and I’ll have to take Chemo style drugs for the rest of my life.
Children for me became out of the question.
My life changed.
I was told before I was 40 I might have to retire. By 40 I’d probably be in a wheelchair because of the advanced degree of the disease.
Currently I’m 41. I’m working full time, and still working on promotions. I walk unassisted 98% of the time. I have hips of an 80 year old.
But I’m still living my best life. I’m happy - and my life is pretty freaking amazing.
Some days sucks - I fight with doctors and the Opioid crisis. Because these drugs were created for people like us who need them to function like humans - but because others have abused them - I’m held accountable for their mistakes. So there are times where I can’t get what I need in order to function because of this crisis.
But again - I’m living the best life I can. And mostly it’s pretty freaking amazing.
Author- Tanya Graham