Thoughts On Trauma, Setbacks & Recovery

I’ve been struggling to write so I’m trying to force myself to do so. This post & some that will follow will probably be of limited interest to many, and will involve a lot of navel gazing 😉

The simple act of living after experiencing trauma can be extraordinarily hard. Not all of the time, but for many of us the feelings of struggle hit in at least some of the time. Right now I am in that place and it’s painful, desperate, and scary.

I’ve had to come face to face with my own mortality far too many times in my life and each of those events gets tangled up with one another. Unfortunately it leaves me in a position where one of those threads of trauma getting pulled also pulls on the rest. My kidney cancer diagnosis has become one of those tangled threads and it’s something that gets pulled daily right now. The large wound around my side healing, the appointments, the questions, the uncertainty, it all keeps this and past incidents fresh in my mind. I am currently living in a world of flashbacks, lost time, dissociative ‘catatonia’, somatic re-experiencing, and the deepest mortal dread. It’s pretty shit to be honest.

recovery-diagram-sane

A picture with a straight arrow labelled Expectations, and a messy arrow labelled Reality.

Continue reading

Body Positivity & Disability

The body positivity movement is an extension of the fat acceptance movement, but designed to be more inclusive to all body types. The goal of working towards loving your body for what it is, rather than what it is not, is laudable and a state of being I would love to achieve for myself one day. It sounds like a really useful arena for visibly disabled people to counter the negative looks and comments that come with it and also a really useful tool for every person living with chronic health conditions that cause pain, fatigue, discomfort, and other often unwanted and unpleasant effects.

Sadly the movement is based in an unequal world, and is therefore shaped by people who often have internalised disablism, sexism, racism, and a whole host of other issues too. It unintentionally forms barriers to disabled people and I want to take a few minutes to talk about them. Continue reading

On Cancer & Chronic Illness

Heya! It’s been a weird year for me, loads of stuff, a lot of it crippling anxiety and a complete loss of motivation, has prevented me from blogging. I’m sorry about that.

As you probably know, I’ve been dealing with chronic health problems for years now; chronic pain, vomiting, nerve damage, gastrointestinal damage, and joint hypermobility. I developed a hiatus hernia in September which was having some pretty severe side effects, so I had an abdominal CT scan at the start of this year. It didn’t just find the hernia, but it also found a shadow on my right kidney. I had a more detailed scan in March, and in April a very nice Urologist and a Macmillan nurse told me the mass was solid, and most likely cancerous (over 90% chance), otherwise it would be precancerous with a very high chance of becoming cancer in the future. They tabled surgery within 4 weeks, and got it out. I’m currently recovering after having a open partial nephrectomy and getting the 21 staples removed this morning.

I’ve been thinking about the ways in which cancer is treated differently to other chronic illnesses, many of which also have pretty depressing prognosis’s; Continue reading

What if Mental Health Was Treated The Way Physical Conditions Are?

If you’ve lived with a mental health condition then you’ve probably noticed people often say unhelpful things like “Time to move on & get over it” or “You don’t seem that sick” or “It’s just in your head”. You’ve probably thought to yourself, “No one is that mean to people with broken legs or food poisoning” and either wished they’d take you more seriously/fallen into a tasty vengeance fantasy/felt even worse than you did before. There is a good chance you’ve been shown this webcomic by Robot Hugs, often with this header attached, and nodded along:

A comic strip from Robot Hugs captures the differences between the way we treat physical health problems and mental illnesses.

I can see why you are nodding along, I’ve been there myself. People can be extremely hurtful when your problems are often invisible to the naked eye. The thing is, I really think this is the wrong way to go. In fact, I think it’s harmful and, comes from a position of privilage. “Why!?” I hear you cry. “This articulates the struggle many of us live with daily! How is that a problem?”. Well, I shall explain. Continue reading

At The Intersection: Down’s Syndrome & Abortion

Picture of a girl with Down’s Syndrome

There has been a lot said over the past 48 hours about Downs Syndrome, prenatal screening and abortion thanks in large part to some tweets sent out by Richard Dawkins:

Whilst many of us naturally baulk at such words we must remember that in the UK prenatal screening for Down’s Syndrome is common place. With an overwhelming majority of the people who are told they are pregnant with a foetus with Down’s Syndrome choosing to terminate and many will then go on to try again. This is something that is worthy of discussion. It doesn’t take much research to realise that many people with Down’s Syndrome live perfectly healthy & happy lives. So why do so many make the choice to terminate? Continue reading

Can We Stop Pitting Visible Against Invisible Disabilities?

Seriously.

Today I read another post about how people with visible disabilities have it so much easier than over those with invisible disabilities. I have, in my time, also read posts about how people with invisible disabilities are have an easier time than those with visible disabilities.

Who is this helping? No one.

It’s one thing to raise awareness of the different challenges that arise from the wide array of impairments disabled people have. It’s another to wallow in “who, in this group of people who are all oppressed by a disablist society, has it worst” .

Passing as non-disabled (having an invisible disability) means you probably don’t get the constant stares in the street stemming from your impairment, the “what’s wrong with you?” questions from people you’ve never met when you are just trying to eat a sandwich in a park, the constant pressure to become a paralympian, random people telling you that you are cursed/are being punished for past life transgressions whilst you are window shopping (and that they can fix it if you give the £250), you probably have never been in a situation where two small steps have meant you can’t physically enter a building or experienced the bus-buggy-war first hand and you probably haven’t had people assume you can’t communicate for yourself on a regular basis. But it also means you have to deal with other problems arising from a lack of visibility. Such as constantly running up against people who don’t/won’t believe your impairment is disabling (because if it was you’d have a wheelchair), being told off for using accessible toilets or parking spaces, having your own bus-war when it comes to using the priority seats and a whole lot more that comes from living in a world where people think disabled people look like “x” and anyone else is either non-disabled or non-disabled and lazy/on the scrounge/attention seeking. Continue reading

One Survivors Perspective on Trigger Warnings

We all hear a lot about Trigger Warnings, love them or loathe them everybody’s got a view and I’m no exception so here is my take on them.

As you may or may not know I’ve got complicated PTSD. I’ve experienced quite a few traumatic experiences in my life (which will get some passing mentions in this), from being severely burned to being trapped in an extremely violent relationship where over 5 years rape, sexual assault and attempts to kill eventually became almost everyday experiences. When I talk about being triggered I’m normally talking about flashbacks. These situations lead to me physically, mentally and emotionally re-experiencing traumatic events the way I did when it occurred. I’m not sure if any of you have been burned neck to ankle but I can assure you it is excruciating. It’s the kind of pain that you hope you’ll only ever experience once in a lifetime, not every time you watch an action movie with a lot of fire effects in it (pro tip: that’s nearly every one). Sometimes I also use the word triggered to describe the non-flashback effects that happen when I disassociate from the traumatic memory; behaviorally I might completely shut down for 30 seconds to an hour, unable to speak or think, or I might be hit with a sudden wave of mortal terror or righteous anger as my fight or flight responses kick in. In short, getting triggered sucks for me and for those around me. Continue reading

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