female looking wistful
Autism / Fibromyalgia / Mental health

It’s not what’s wrong with you but what’s happened to you

As you go about your daily life, you hope your mind and body will continue to function well. If you start to experience some malfunction you might visit the doctor to find out “what’s wrong”. They might ask some questions, do some tests and come up with an answer; the aim being to find a “fix” for the problem. For example, a vitamin deficiency that needs replacement treatment or an infection that requires anti-biotics.

female in bed with drip in arm

But does anyone ask why? Some people are happy, even prefer to get on with life not asking why! But, why would I become vitamin deficient or get an infection now, rather than last week or last month? Of course, treating it and moving on is a valid coping strategy but without understanding the root-cause, these things can re-occur. Sometimes the questions may reveal challenging answers; “I’ve not been eating healthily because I’m stressed”, for example. Stress impacts the mind and body in huge ways. This isn’t about apportioning blame, sometimes illnesses do just happen but understanding underlying causes and facing up to what we can tackle can safeguard against serious illnesses in the future.

When someone starts to struggle with their mental health, it can be natural to search for answers. If I’m more irritable, quick to anger, not sleeping, have a poor appetite and wondering what the point of life is, I may start to wonder “what’s wrong with me?”. Medical professionals often want to label things—this is a short-hand way to communicate “this set of symptoms may respond to these treatment options”. Diagnostic labels are used to communicate clearly and effectively between people who know what the labels mean.

Is a label helpful if no one listens to the experience?

I have a number of chronic illness labels, but does a label help? I’ve experienced making repeated trips to consultants searching for answers. Being given a label of “fibromyalgia” or “chronic migraine” is helpful if they lead to treatment options but it’s vital to listen to how the patient’s life is impacted. For example, I’m someone who ignores my pain; I disconnect my brain from my body and have, at times, caused damage to my body. When I don’t listen to my body, I don’t know when serious pathology is occurring and I should stop and rest.

Male holding his neck in pain

Other people simply cannot ignore their pain and this leads to them not being able to work and being isolated from friends and family. These are 2 very different experiences of the same diagnostic labels. There are individuals across the whole spectrum, each with their unique experiences.

By not listening to individual experiences, people end up with inappropriate treatment plans. For example, exercise pacing is an excellent management technique for people with fibromyalgia but some people will need to be reminded to push themselves while others will need to be reminded to rest!

I struggle to rest because, while I wouldn’t judge someone else for doing it, for some reason, I feel guilty and struggle not to see myself as lazy when I stop and take time to relax and recuperate. The way I talk to myself is related to my experiences, there’s nothing wrong with me. Just as someone who struggles with motivation may have a fear of failure—there’s nothing wrong with them either, their experience has taught them, striving and achieving causes anxiety and they may not have the tools to manage this.

Is it only events that dictates how we feel?

Julie was looking after her neighbour, Jeff's, dog. While out on their daily walk, Digby wriggled loose from his collar and ran into the road and was killed by a car. Julie was devastated and thought immediately about how distraught Jeff was going to be and wanted to let him know as soon as possible. Then Julie suddenly remember Jeff had a big presentation at work and realised it would be best to let him know in person when he got home from work later in the day. When Jeff got home, it was excited to tell Julie about how well his presentation had gone. Julie sat him down with a cup of tea and broke the sad news to him. Jeff was, as expected, in pieces—he felt awful that minutes earlier been so excited about his presentation when this catastrophic incident had occurred so many hours previous.

If asked, Jeff would say he was upset because his dog dying. However, if we break this down, his dog had died hours earlier and he was not upset at that point. The fact that Jeff wasn’t upset about his dog dying when it happened wasn’t anything to do with the event, it was to do with the transfer of knowledge. Jeff’s having to manage the fact that his dog had died, yet his life carried on as normal and he continued to feel happy, excited, even.

Jeff is not only managing the death of his dog, he’s managing the fact that he wasn’t there and someone else was in control of the knowledge around the death. They had the power to make a decision about when to tell him and this impacted his experience. I’m not making any judgment about whether Julie did the right thing to withhold the information.

Our experiences shape our reactions

Most of us have stories about people reacting in opposing way to extreme news. 1 person can be given news about terminal cancer, and they start ticking items off their bucket list while another person may start grieving the life they’re not going to live—neither of these reactions are wrong, just different people reacting differently.

As a counsellor, I may make observations in my clients and need to assess whether it’s in their best interests to share my observations. For example, I may notice an individual repeatedly self-sabotage their ability to achieve a goal they’ve set themselves. It may be out of their awareness due to the habitual nature of their thinking patterns and behaviour. Some reading this may think “of course I’d want to know, I’d want to tackle anything getting in the way of achieving my goal”. But what if I told you the self-sabotage was related to a complex protective system related to managing safety around previous sexual abuse?

I’m bound by ethical principles of non-maleficence (do not harm) as well as ensuring client autonomy. It’s important I manage the knowledge I’ve gathered sensitively, sharing it with the client in a time frame that is kind and compassionate.

Would it help to label my client as broken or in need of “fixing”? I don’t think so. I can see that what has happened to them has led to them behaving the way they are now. This therefore means that I can react empathically, and healing can then begin. While walking alongside them, we can work together to become more aware and therefore adjust thinking and habitual behaviour patterns.

How does permanent disability and neurodiversity fit into this idea?

Disability doesn’t have to be a dirty word! There’s no need to come up with strange new terms such as differently-able or neuro-different. While there may be some people who like those terms, it usually comes from a position of fear. Everyone’s on their own journey in relation to their disability and may choose to use different terms along that path but fully accepting a brain or body with a permanent difference is possible.

When I received my label of “autism”, I didn’t think “oh good, there’s a label for what’s wrong with me”; instead, it’s a way of considering different versions of normal. There’s nothing wrong with being considered different. Some people have tried reassuring me “we’re all different/on the spectrum”; this diminishes and invalidates the experience of difference, but difference doesn’t have to be wrong, broken or feared.

The significant impact of a permanent disability needs to be validated but a new normal is not to be feared or recoiled from.

Changing the way we think about something can change our outlook and how we manage the situation. Instead of considering yourself broken or in need of fixing, remember that your experiences have made you uniquely you. This means, new experiences can mould and transform us; if we move away from the idea of thinking about what’s wrong with us we open up the exciting idea that we can be whoever we want to be!

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