There is NOTHING easy about autoimmune diseases… nothing!
Not even diagnosis.
Unless you are one of the small number of people who have a relatively smooth diagnosis process and a quick trip from developing some very puzzling and painful symptoms to being told you have a life-long, incurable or unpredictable disease. Or you might belong to the OTHER group who will go through medical hell and beyond, become jobless, friendless, deeply saddened and worst of all… doubted by everyone, even yourself!
I was part of the second group.
I had the awful, living nightmare of slowly watching my life unravel, losing my job, losing my friends and family, being doubted and judged. I was accused of being depressed, a drama queen, a hypochondriac and many other hurtful things… all the while suffering pain and a list of many other frightening symptoms. I spent most of the first decade feeling alone and scared.
My doctor and I tried everything… vitamins, supplements, alternative therapies, therapists, dieticians, you name it. I quit smoking, quit drinking, changed my diet, tried every ‘cure’ and Google remedy… YOU NAME, I DID IT! I still do many of these things and much, much more. Always trying. Always hoping.
The first specialist I saw spoke to me for less than 20 minutes, didn’t request tests or scans and ushered me out the door… that happened several other times too… Which only made me feel even more and more lonely, unwanted and lost… and STILL the symptoms remained and some even worsened.
The years were trickling by. My years. My life. My career. My opportunities. The physical and emotional pain was excruciating and indescribable. I actually started wishing I WAS insane! At least there are treatments for that! I would of happily undergone a lobotomy to rid myself of all of it!
But there was this little thing called self belief and integrity that kept bubbling up. Where it comes from I will never know; but I owe a whole heap of it to my husband and constant advocator.
We persevered. We coped. We cried and we kept going.
Sometimes it takes many specialists, many scans, many tests and a whole lot of your life and self confidence to pursue answers. Is it fair? No. Is it easy? No! Is it all necessary? I really hope it doesn’t have to be in the future. I hope the future for sufferers and their families will be a lot less painful.
You see, some Autoimmune diseases are ‘… a diagnosis of exclusion…’ and some tests are at best 50% accurate. Some diseases take years to diagnose (eight years on average) and mostly you STILL need a doctor / specialist who will see the ‘bigger picture’ and be prepared to work WITH you; sometimes for a very long time. This is more often the ‘Crooked Line’ of life with Autoimmune Diseases… and that is just to get a diagnosis!
I know so many stories and experiences where so many have been misdiagnosed with everything from allergies, depression, fibromyalgia, dental fillings, you name it! Misdiagnosis is almost as bad and as dangerous as diagnosis Limbo!
The crooked line can sometimes feel like a noose around the neck.
And then one day, a specialists came into my life and started actually doing some tests, and asking questions. She cared. And it made a big difference. Slowly more and more diagnosis started coming and, ironically, now I wish they would stop. I really didn’t want a lot of diagnosis, all I ever wanted was my old life back, but its not coming back; ever.
The crooked line doesn’t go backwards. Sadly.
It’s hard to explain to someone who hasn’t walk this path, but for those who haven’t had to walk the crooked line all we ask is that you be patient, kind and respectful to those of us who do, and may have to for the rest of our lives.
The crooked line is hard. It hurts. It breaks you. It takes all you have, everyday, and more. And it never ends. But…
We persevere. We cope. We cry and we keep going… Somehow. Together.