Trigger warning: Themes of depression, anxiety and suicide that some might find distressing.
My mother once took a large piece of paper, big roll of tape and a thick black felt tip pen and wrote “Please do not use the bell” in big letters and stuck it up over the front doorbell button. I was sixteen and had just threatened to kill myself the next time the doorbell rang. It seems like a ludicrous things to do, thinking back on that blurry day twenty years ago. At the time, it made perfect sense to me. I could not deal with the sense of panic any more. It felt as if I only had that one option and no alternative. Everything else was beyond my control.
I was anxious all the time and then, just when I thought I could get used to the bitter taste in my mouth and the sensation that I was living someone else’s live in someone else’s body, panic would hit. There was a million triggers. I could not keep track of them all and so I stopped going out. Then I stopped leaving my room except to go to the bathroom. Then I didn’t want to put my feet down on the ground getting off my bed. Everything was terrifying. I wanted to sit in one place where there was no light, no sound, no smells, no people, just quiet nothingness just until the panic, the indescribable fear that something out there that I could not control was going to come and get me, dissipated.
The doorbell was a big trigger. Friends came by to visit. I had not been to school in a long time and they brought little gifts or cards and an overwhelming awkward silence. I did not want to see them. I was embarrassed. I used to have the capacity to bundle my anxiety into a small suitcase then sit on it, fasten the clasp and drag the suitcase that had something kicking and screaming inside into a dark closet and lock it in where the sound was muffled through the door and if I turned the music on loudly I almost could not hear it. This skill, combined with a terrific placid smile was the face I put on every day when I left my bedroom for as long as I could remember.
It meant that the words used to describe were good words. Outgoing, friendly, generous, compassionate, helpful, talented, intelligent, hard working, dedicated, fun, entertaining, sensible, reliable, loyal, level headed. Over time I lost control until one day, I swallowed a bunch of pills because I couldn’t make the panic and the pain stop and I couldn’t live with it either. Everyone knew. I didn’t want to see anybody ever again. But I did.
Time went by and I got help. Surprisingly the most help came from a physiotherapist, an occupational therapist and a rheumatologist familiar with Ehlers-Danlos Syndrome. Three years later I had a diagnosis and with it came the validation that all the things that was wrong with me, was not my fault. I made a decision that day, I decided that I would not let it change a thing. I told no one. I did not ask for any help. I was going to manage my health on my terms and everything would be fine. It was a bad decision.
Everything wasn’t fine. I realised that when I was sitting cross legged on the lawn of a mental health hospital whilst trying to work on my post-graduate course. I realised that everything was not fine and nothing was going to be okay. I could not keep up. I could not do all the things my friends did. I could barely make it through an empty day. And always, on top of everything else, the anxiety was there, always there, waiting for me to fail so that I would go back to the corner of my bed where it was safe and quiet.
It took a few more years to come to terms with my EDS diagnosis. It took almost ten to admit that I could not function without help and support. It has taken another ten to try and obtain the level and type of support I need to function as well as I possibly can.
I did better dealing with the anxiety because it had a face and a name and a reason for existing. I learned that panic attacks were much milder when I lay down, raised my legs, gulped down two bottles of water and a packet of crisps. Autonomic dysfunction and anxiety fuel each other. Manage one and the other improves as well.
Many of the strategies I learned and employed to manage my joint issues, asthma, chronic pain, the debilitating fatigue kept lightening the load. Anxiety became more like a butterfly that flits in and out on occasion, resting for a moment on my arm and then it was gone. I was okay with that, more than okay, I was exhilarated.
Lately, the butterfly has turned into a gigantic big fat caterpillar that does not want to live in a suitcase. Try as I might, I cannot get it back into that suitcase. It climbed out and it saturates the air around me and it is hard to breathe. I breathe it in with every breath I take. I do my breathing exercises. I do my stretching exercises. I do my meditation and relaxation exercises. I do my positive thinking exercises. Nothing really helps. I try to ignore it and just keep projecting a calm demeanour and maybe my emotions will follow suit. They don’t.
I worry. I obsess. I lie awake most of the night preoccupied with little details that I know is irrelevant. By next year, last week’s social services assessment will be irrelevant. In ten years, maybe someone at CHC will pick up the phone when we call. Assessments have a very short shelf life. Past assessments may taint future assessor’s opinion, but they can do that in a positive or negative manner. I cannot keep track of it all. I cannot correct the mistakes going on record. I cannot summarize my whole life accurately in a dialogue during a single meeting without things being missed, misinterpreted and misunderstood. This is just a fact of life. As my voice carries the least weight because this is my life and I am not an objective observer, there is no point trying in any case. So water under the bridge. Try again next time.
I want to stick a big sign over the doorbell again saying “Please don’t ring.” Actually, I want to lock and bolt the door and many days, I don’t even go outside into our private back garden because there are people everywhere and I am so tired of being judged.
I know the man walking to the gym with his iPod on most likely does not even notice me through the fence, he probably didn’t even look in my direction, but that does not seem to matter to Anxiety-escaped-from-the-suitcase. He is there and being there, he has the potential to judge in the privacy of his own head.
It is stupid. It is limiting. I am fully aware of all these things. But Anxiety does not care. I want to go upstairs and hide from the world, curtains drawn with my feet tucked in under me. Somewhere with no noise, no eyes, no mouths, no opinions, no tight lines around lips that say I think you are exaggerating and I have no sympathy.
I do not indulge this desire to withdraw. I make time to unwind, I hide from door bells and people for a little while, but then I plant my feet firmly on the ground and I do other things. I take proactive steps. I focus on projects that may some day improve our lives. I talk to family, I sit and watch my daughter play and smile and clap when she looks at me. I hope that in doing so, the anxiety will get tired of not getting any attention and climb back into the suitcase to sulk.
It is not the best strategy in the world. I still avoid much, I am still frequently overwhelmed and struggle not to topple over the edge by accident. But life is bigger than fear. I may not be brave enough to stand alone or to stand up against other people, but for now that has to be okay. I just have to be brave enough to not give up on life and living it well.