For this post – I will start at the end, sort of – Releasing toxic shame. I could not move forward in my life, nor see myself clearly till I managed to release my toxic shame. I had read about it, initially, over fifteen years ago. John Bradshaw’s groundbreaking book, Healing the Shame That Binds You taught me about shame. I recognized myself as being “shame boumd.” I learned more about it, talked about it in therapy, and yet – it was still with me; dogging me. I talked the talked, but my walk was impaired by the burdenous pile of dung I dragged around with me. It took many many years for me to let it go, and until I did I would never see myself or my situation clearly. It is a process that I am still working on.
I was a never a robust individual. My young friends, mostly of Irish decent, never seemed to get ill like I did. I missed out on so many things because of sinus infections, throat infection, stomach bugs, and the like. I heard the constant refrain, “gee you get sick a lot!” It felt like a judgement to me, that I chose to be ill. Thus began my cycle of shame in this particular area.
In 1989 I became so ill with the first of what would be a string of illnesses. Chronic Fatigue Immune Dysfunction Syndrome, in 1989, was just beginning to receive recognition. At the time, I had an active Epstein Barr infection, so at least there was some sort of proof. Eventually, however, research linked CFS with depression and stress, making it somewhat of a joke to most people. This is when I started really stockpiling shame. People had lots of opinions about my illness; hypochondria, neurosis, depression, etc. The illness mercilessly dragged on, even though it was only supposed to last a year. I felt shame about that too. Then the next problem popped up. Fibromyalgia, which my ex-lover endearingly referred to as my “imaginary illness.” I had learned through the years to keep my mouth shut about these things, so actually very few people knew I even had it. I hid being ill quite well. Without even realizing it I adapted by strictly pacing myself and avoiding situations that would challege my immune system.
When I lived up north it was much easier because it wasn’t uncommon to not see people for months at a time during the winter. No one knew that I was in bed, often fighting pneumonia, or asthmatic bronchitis. CFS is cyclical in nature, so luckily for me, spring would roll around and I could resume pretending. I learned to live a lie and in doing so I reinforced in my mind that I had something to be ashamed of. After years of this charade, I moved to Florida to avoid the brutal winters. To my dismay, I was still sick. On top of which, I got the second confirmed diagnosis of adult ADD. I didn’t even bother telling anyone about that. Most people would laugh or say, “yeah right, you get everything you read about.” I didn’t really believe the ADD diagnosis, but was so tired from the CFS and Hashimoto’s (oh I forgot to mention that one), that when my GP suggested taking Adderrall, I figured it probably wouldn’t work anyway but might give me some energy.
Lo and behold, something very strange happened. I could think straight and a bit of energy returned. Those very close to me noticed a DRAMATIC change. They had no idea I was being medicated or for what. This made me think that maybe I actually did have this annoying, embarrassing disease. I went to a psychiatrist who specializes in ADD, so that I could learn more about it from someone knowledgable. She suggested that all my illnesses were related. They all had a physical root cause that was NOT MY FAUILT! And suddenly a choir of angels sang. At that moment I realized how shame bound I really was. Justifying why I was sick so much my whole life, tired so often , made me feel like a weirdo. Somewhere at the core of me, I felt that it was my own fault.
After seeing that psychiatrist I started researching, and suddenly the pieces all started fitting together.There have been so many monumental advances in CFS and the way people view it over the past year; they even changed the name to Systemic Exertion Intolerance DISEASE to give it more respect and characterized it as a neurological disease. This is all big news, but I had not been paying attention because I didn’t want to be associated with it anymore. I realized that I had abandoned myself. I let other people’s opinions and ideas permeate my soul. I had lost faith in myself and stopped fighting.
Even though, all along in my heart, I deep down knew that something was not right with me, I could not own that until there was definitive proof to back it up. So now, I started looking for answers once again, to improve my life, not to prove to people that I wasn’t all the mealy mouthed things they insinuated. It all led me here. Getting diagnosed and treated for ADD actually set me free. Partly because I could think more effectively and partly because things started lining up and making sense. This is a big step for me. To go public and admit that I, in fact, do have ADD, as well as CFS, Fibromyalgia, and Hashimoto’s Thyroiditis. But guess what I unearthed in my research.? A lot of people do, and they are usually kind, sensative human beings. That is the common denominator. That’s not such a bad thing now, is it?
I mentally feel like a huge weight has been lifted off me and I also believe that I am on the verge of finding answers that will greatly improve my quality of life. Is there a genetic component to all of this? Maybe, maybe not. But in the end, it doesn’t matter because this is my journey, and one way or the other, I will sort it out. Now, for the first time, I care about myself. My journey is one that few people can understand, so I can’t expect them to. And THAT is how I made peace with having an invisible illness. Do you have shame tangled up with your invisible illness? I am here and ready to listen! You are not alone, there are many of us. I wish you peace.