Photo by Harlie Raethel on Unsplash
Disability

When Helping Hands Still Hurt – Part 1

Trigger Warning: This post contains discussion of medical trauma.

Today is the International Day of Persons with Disabilities. So this week seems like a good week to get back to writing and to think about some of the issues that go hand-in-hand with disabilities. 

Today I want to touch on a difficult topic for a lot of people, and that is the issue of medical trauma.

You see, the theory goes that you mostly don’t spend too much time at the hospital, and when you do you go in and they put your arm in a cast or stitch up that nasty gash on your leg or give you some antibiotics for a few days and then you go home and get on with your life. It’s a fairly simple transaction emotionally for a lot of people. It’s not pleasant – no one books time off work months in advance to do this for the fun of it – but we’re grateful in the end because we’re able to walk again or we stop bleeding all over the carpet or we no longer have a stupidly-high fever. And this is good.

But sometimes things happen within the realm of our medical experiences that do create trauma. That’s because whether or not someone experiences trauma in any given situation is highly correlated with whether or not the individual experiences adequate support, is properly able to understand what is going on, is able to process events as they occur, and has significant opportunities for agency. 

Higher Risk

So while everyone has the potential to experience medical trauma at some stage in their lives, for folks with disabilities and their caregivers the number of interactions they have with our healthcare system by nature increases the opportunities for medical trauma (more experiences = more opportunities for things to go wrong). I also think that there are a few other issues that push people with disabilities and their caregivers into this higher risk category for medical trauma.

Unrelenting pace. 

Whether their disability was present at birth or whether it was acquired later in life, for many with disabilities or their caregivers there was a moment before when everything was calm and peaceful and basically predictable, and then a moment after where all of sudden it felt like information and challenges and changes and pain and therapies and medications and inputs were coming at them harder and faster than they could process. There is also often a sense that agency has been lost, as a steady stream of medical practitioners ‘rule’ over the minutiae of people’s everyday lives.

Each of us as humans has a maximum load that we can carry. Any one or two or sometimes even more inputs isn’t that hard for us to deal with, but when we cross that critical threshold – especially when we stay across it for an extended period of time – we activate the chronic stress processes in our brains that make everything more challenging. Even if there is never any one, BIG, major trauma, the continuous nature of living with chronic illness or disability is enough to create experiences of trauma for many people because it interferes with our capacity to understand and process our experiences.

Lack of Broader Support Structures and Social Understanding.

As humans we are designed to process stress through our social interactions. When we’ve had a bad day at work we go out to see friends in the evening and talk about how our boss has been treating us or the overwhelming pressures we’re feeling and the people around the table can usually easily relate. We swap stories back and forth that are our very straightforward way of saying to each other “am I human? – Yes, you’re human!” And we go away from these interactions feeling less stressed and more connected. When it works it’s a great stress release!

But when we’re dealing with disabilities and chronic illnesses, there are often (significant) barriers to accessing supports (fatigue, immune suppression, hospitalization, accessibility, etc.) as well as a much more limited number of people who can truly relate and exchange those stories and share those experiences with us. When folks with different abilities try to connect across these lines, they are often met with blank looks, misunderstanding and even sometimes find themselves being bullied or ostracized because of people’s fear of disability and chronic illness.

The loneliness and isolation that can occur for individuals and caregivers alike can be significant, as it gives no outlet for the stressors that are building inside, and no way to ‘re-file’ that stress, which can increase the sense of trauma as it decreases our understanding and opportunities to process.

Furthermore, some with disabilities have caregivers who are able to provide the level of emotional support and presence to them that they need as they go through procedures, treatments and therapies, while others face these (often scary) experiences on their own. This lack of support can have an incredible impact one way or the other on how individuals are able to process what is happening to them.

Pain.

Maybe this is obvious, but our brains aren’t really too pleased with the idea of pain. In fact, pain and fear are very, very closely associated – for obvious reasons. If we are in pain, the mind and body assume that something is wrong – that we should be on high alert – and so our amygdala (the fear centre of our brain) goes into overdrive.

The problem is that for some of us, pain is not some unusual indication of a sudden danger, but rather the reality that we live with day-in and day-out. Regardless of the ‘level’ of pain that is experienced, the constancy of pain can contribute to our experience of trauma. However, for those whose disabilities include extreme levels of pain – especially over long periods of time – this pain in and of itself can be traumatic, especially as it can feel like it completely removes all sense of agency.

Experimental Practices.

For some with disabilities or chronic illnesses the treatment path is fairly well-known. We do this intervention, this therapy, provide these mobility aids and we can expect this type of outcome. However, for others complications or unexpected outcomes can lead medical practitioners into sometimes unavoidable experimental practices that may or may not end well for the person in question. Because experimental practices are just that – experimental – it can be very difficult to predict the course of treatment. There can be little understanding of what is happening in the moment (because often nobody knows). And things can happen so quickly that it removes any sense or opportunity for agency.

When You Don’t Get Taken Seriously

The final point I want to highlight today is what happens when patients and caregivers don’t have their concerns taken seriously. Now, I get that doctors and medical staff go to school for a really long time to do the jobs that they do – and I’m grateful! But I can’t tell you the number of times that I have had my gut instinct as a parent called into question – only to later be told off for not getting treatment sooner – or had doctor’s ignore my attempts at self-advocacy because I was “only a child”. These experiences can increase trauma both by removing agency and autonomy and also by missing important clues early on that could have been rectified with fewer, less invasive interventions or avoided altogether.

If you’re interested in reading more about medical trauma, make sure you check back in tomorrow for my own story of medical trauma. Then on Wednesday, Thursday and Friday we will look at ways we can proactively protect against medical trauma in the midst of disability and heal from medical trauma that we have experienced.

 

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