I recently had a bad experience with a doctor, though it was good news that he doesn't think there is anything structural wrong with my heart, but it was also bad news he basically confirmed he thinks I have POTS, basically swapping one bad news for another, basically confirming that I am chronically ill, not a huge surprise but I still had held on to the delusion that maybe whatever is wrong with me would be a quick fix, but pots is the opposite of that its under researched, not taken seriously, barely any specialists. But there is a whole story to this appointment with the cardiologist that left me in tears. It felt like I was crying for help, and yet no one would help me, I was just met with a dismissive shrug of shoulder. This distinctively reminded me of my childhood, showing signs of being abused and neglected a s a child yet no one doing anything. But what I did get out of the interaction was a referral for a diagnosis, and my new reality. Which is I am chronically ill and disabled. At first accepting the reality of being disabled was hard, I wasn't sure if I should use a stick or a wheel chair even though I know it would help me, I wanted my old life back, I wanted to be able to run again and climb mountains, which is not my current reality, this isnt me giving up, its accpeting that at this point Im too sick to do those things, its giving me permission to be kind to myslef and patient.Its giving me permission to be honest about how Im feeling, I remeber when I went to dublin, I didnt want to explain to my mum that I couldnt run for the bus without feeling extreely unwell I was confused and scared, and felt weak and helpless and just wanted to pretend it wasnt happening. You know when animals that are often called prey, will pretend to not be ill or in extreme pain so they dont get killed. Well this was the sort of logic I was using, it makes complete sense as one of the ways I kept myself as a kid from my abusive father and other men was to act brave, not cry, don't appear hurt, appear unfazed, dont smile, run only when you need to, close your eyes if running would make it worse, dont scream or shout, dont appear ill or weak. Thats what keeps me safe, so being chronically ill constantly triggers me, over the months Ive become more at peace with it gradaually. Peace for me is giving myself permission to use moblity aids, and access help and support. I wrote something in Christmas about how I struggled to accept my reality and I wanted to share it on here.
I have this habit of feeling like my life is over, as I scroll through a list of specialist with 2 years long waiting list, after every doctor who doesn't understand, after every a and e vist, after every episode and flare up. But really my life has just begun. Im 18, and I have built my own life up from rubble before, I can do it this time as well, Im more than capable. This may not be an ashes to riches story, but this is my story and its not ending now after Ive worked so hard.
I think when you feel so unwell and in pain for so long, its easy to tell yourself stories, to become blinded by this overwhelming shame.
I was surprised the other day how shameful I am of my tremor, trying to pretend that Im just clumsy, because for some reason speaking bad about myself is easier, than admitting I need to lay down. I dropped a bag, a shop assistant gave me as my hands where shaking so much, but yet I wanted to go and run and hide, so he didnt look at me different if he found out that Im ill. Which is ridiculous he probably neither noticed or cared, for some reason I dont want the world to see me ill, in fact I dont want the world to see me at all, as I feel like Ive failed. In my head Ive failed to be the daughter my mum needs, the friend my friends feel, the worker a workplace would need, a student, Ive failed my granny by not being able to find a specialist to treat me even after extensive googling. This brings me so much shame, that I started well still do loathe myslelf, because, who I am is my body, I loathe that it doesnt function as it should. I loathe every dismissive doctors appointment, I loathe being a worry for other people, I loathe having to explain to people how Im sick. But when it comes down I havent failed anyone at all, this isnt my fault and is out of my control. I have not failed anyone, in fact the fact that Im still here even after wanting to leave so many times is a feat in it self. My doctor told me the other day when I said I didnt think the meds were doing anything "well doen for trying them". I nearly cried, because in all these last months, not once has a doctor recognised how much I am trying, trying to get better, trying to manage myself, other people and doctors. And all the expectations, behaviours and beliefs. Its a lot.
Shame is what made me want to isolate myself, I had no desire for my friends and family see my health deteriorate. I didnt and still dont have the complete vocabulary to explain what is going on. How do I explain to the people I love, that sometimes I will need to stop what we are doing and lay down, how do I explain that I might need to leave early but I really dont want to and I will defo cry about it later on, how do I explain that Im more tired than I was and it might get a bit better with stargies but Im not going to be the same person again. Its a really tough, vulnerable conversation, that I avoid at all cost, but Ive always found there is no point in burying your head in the sand about this. Trying to accept my reality, is the closest to any form of control I have over my illness/es which are unpredictable and flauncate over time. So its very difficult to plan the next day yet alone what the years ahead are gonna look like, I can barely work out this in my head, let alone explain it to other people. As I don't want people to think that Im being lazy, nor do I want people to over worry, so trying to navigate the conversation is a headache in it self. Though Im never to sure why I have this stubborn belief that Im lazy, when that couldn't be further from the truth.
But going to back to this belief that my life is over, couldnt be further from the truth, Ive already lived a life packed full of life experinces, not all of them good, which my granny reminded me of, I ahve time Im only 18, not long ago many long term illness that doctors now know how to treat they didnt know how too, new research is always coming out, but also I dont have to do everything right now yeah I might not be able to run a marathon right now, but one day i might or i might be able to run 1 mile which would be a feat in itself, but that doesn't mean my life is over, plus I already done alot of these things as a kid. As a kid, I loved being outdoors and exercising, I was always either in the gym, at sports club, riding horses, going for runs. I climbed ben Nevis by myself at 14, Ive ran in several long distance running competitions, done a trilithon, competed in fell running, been abseiling, done high ropes, rock climbed, gone gorge walking, been eventing, done show jumping. Ive travelled to Egypt, portugal, spain and greece and france, switzerland, africa and ireland. Ive lived through abuse and neglect and religious truma and isoaltion. Ive reported my abuser. Ive got 6 national 5 qualifcations, ive got 3 alevels. Ive been in clubs, ive advocated, Ive run workshops, Ive worked several different jobs in a guest house, stables, clarks and a bakery. Ive attended uni and then I dropped out. Ive moved town 3 times now, and house over 8 times. My life is just going to look different, Im going to be forced to not give a fuck about what anyone thinks of me, Im going to have to learn how to use moblity aids in public, advocate for myself in doctors office,ask for help, accept accomdation, learn to pace, learn to rest, learn to put my health first.
Several therapists have enforced in to me, the way of talking to yourself as if you would to a friend, as a way to be compassionate and kind towards yourself. If I was speaking to a friend who was going through something similar I would say, I know your scared, overwhelmed and tired, but trust me your life is just beginning and its going to be great, it will be different than what you originally excepted, but its not over you are a fighter you are going to fight for treatment that is offered, you are going to fight for your accommodation at work, school, your going to be honest with people and set boundaries to protect your health, you are going to learn how to use moblity aids with confidence. I would tell them , though these experiences suck, they are leading up to something amazing whatever that may be or you want it to be. I would tell them that they are not a burden, they are still a friend, daughter, a meber of this society, being ill doesnt take that away. You dont have to keep putting yourself under preassure to turn up as a healthy person, or mask it. I would tell them I see how hard they are trying and how amazing the refusal to give up. I would say I beleive you and this is shitty, but you are not alone at all, and even though it might seem impossible everything will work out.
Love Amy x
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