Throughout my increasingly long battle with chronic illness, I have noticed just how much I hide from the outside world. What starts off as one day with a headache and an ‘I’m fine’ has turned into years of feelings all neatly held out of view, sometimes even from myself. It is so easy to put on that practiced smile, and pretend to the wold that everything is still ok, perfect, fine. Non of it matters, although all of it really does.
Having recently gone through a partial thyroidectomy, I found myself back at home for christmas.
The surgery itself went relatively smoothly, tho I ended up staying in hospital for longer then I should have done because my ability to swallow solids has been messed up thanks to being intubated (oedema inside my throat coupled with swelling outside on top of already having oesophageal dysmotility), and it proved pretty tricky to find the right pain control. I ended up seeing an ENT specialist, the speech and language team (apparently it will take about 3 months for my swallow to settle) and the OT who suggested both a wheelchair so that I can get out more, and also the possibility of looking into supported living through my social worker – it seems that not being able to leave the house much really isn’t all as normal as I pretend it is.
Barely a week after my surgery I was becoming increasingly frustrated that everyone in my family, and I mean everyone, was telling me that I looked fine, and was obviously better (even though I am STILL living largely off rice pudding). It made me so angry because it made me realise just how much I am used to hiding all of the symptoms I experience daily. I am so used to hiding feeling like crap that even after surgery I can’t bring myself to break the illusion and allow myself to be ill. I wanted nothing more then to crawl into a hole. I wanted peace and quiet, I wanted to be allowed to cry and experience the pain, to be allowed to be the Charlotte that has just gone through surgery. Yet instead of this, I found myself being guilt tripped into helping my mother clean the house, care for my Nanna, and play the happy and bubbly woman that I know my family prefers to see.
Having got back to my little house, with just me and the dog, it is really starting to hit me. The emotions have all been so held back that I genuinely believed I didn’t feel anything about this surgery, or even about all of the other crap that my many other health conditions bring with them. I had no feelings, no describing words, just ‘fine’. This is not altogether true tho.
I am not fine. I am scared, I am lonely, I am in pain and I am sad. I am frustrated, I am angry, I am exhausted and I am fed up. I am a ball of mixed up emotions that have all been funnelled into nothingness and masked by spending my time learning to crochet – ever the practical one. This way of living is so normal to many with chronic health conditions, but it is truly an unbearable way to be.
Why is it that we feel such a need to hide from the outside world? Our reasons will be individual to our circumstances, but I know that for me there are a few.
A lot of it is that I was conditioned into it from very early on. We don’t talk about feelings in the family I have grown up in, and this extended out to physical feelings as well. I often attended school with a raging temperature, sick with the flue or ill with tonsilitus as a child. I went on countless music courses in excruciating pain with repetitive strain injury as a teenager, but it was a case of taking some pain killers and shutting up, so that is what I did. By the time I was an adult, I figured thats just how people deal with pain, and it has become so ingrained that I find it very difficult to sit down and actually tell anyone how much pain I live in every second of every day.
Some of it is protection, and this works two ways. I protect others from my conditions by brushing things off and downplaying the symptoms. I protect people because I don’t want them to have to find a way to deal with it when there is already so much going on in their lives, or if it would make them feel uncomfortable. I don’t like being the awkward one, so if I can sense that its a difficult subject for someone else, or that they wouldn’t want to depend on me like they would a normal friend, then I will withhold the reality. I also use it to protect myself. I have sat through so many awkward or difficult conversations where someone hasn’t understood the impact of my conditions that it is simply easier not to tell them. I don’t want to feel angry when I’m misunderstood, nor upset when they say the wrong thing, so I don’t say anything at all. It seems easier all round on the face of it, tho it doesn’t half put you in a lonely position.
Another part is that I don’t want to be perceived by others as weak for being ill. EDS and POTS seem so easy for doctors and relatives to discard as laziness that I have become used to not mentioning them at all. I don’t want people to tell me that I embody the one thing I already fear most, which is that I choose not to work, and somehow choose to be ill. That if I just put the effort in, I could magically get better and be well enough to work. I know that non of this is a choice, yet the fear of being perceived this way is enough to keep me quiet to everybody around me.
Today I went alone for a cardiac MRI. My back seized up to the point that it had me in tears (even on tramadol), and took 2 nurses to get be on my feet. The results of which I am petrified of because I really don’t need anything else on my plate at the moment. On Monday I will be going alone to a neurology appointment and to see a GP (a new GP was mine has now left which is terrifying) about the fact that I am still struggling to swallow post surgery, and the nausea I am experiencing is pretty close to torture. I have barely managed to eat anything since getting home, and I have no idea how on earth to sort it all out whilst still maintaining good pain control. Then on Thursday I will be seeing my ENT consultant and getting the results of the biopsy from my thyroid (there was a 30% chance that the nodule had cancerous cells). All of these things scare me. All of these have different implications on my long term health and wellbeing, but I have no choice but to turn up and deal with them on my own and then crawl back home and try to ignore the bigger picture.
Thats just 1 weeks worth of appointments, yet the rest of January looks set to follow on as its started.
I am so tired of pretending that I don’t care about any of these things when the reality is that I am petrified of the body that I’m living in, and there is not a thing I can do about it.