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Placing my pain – or how I’m learning to say “ouch” in all the right places!

In my previous blog Saying “Ouch” in all the Wrong Places, I describe our sense of interoception and how my sensory processing differences result in my brain receiving very muted signals about what I feel inside my body. The blog gives some examples of how this manifests for me and the challenges this creates when attempting to describe medical symptoms and access appropriate medical support.

Today I visited the dentist. Dental appointments would have been unthinkable when I wrote that earlier blog, but with support over the summer, I have had several visits to the dentist, requiring x-rays, a tooth extraction and follow up treatment for ‘dry socket’. I went back today because I was experiencing symptoms of severe pain.

Note that I state experiencing “symptoms” of severe pain and not “experiencing severe pain”. Whilst my muted interoceptive experiences have remained similar, my understanding and acceptance of what they mean for me has changed considerably.

Sensory processing:

Each of us experiences pain differently. It’s common knowledge, and we often attribute unhelpful value judgments to people’s experiences of pain. The way that our brain processes the signals that come from our body is unique for each of us. It is dependent on the context too, and can fluctuate. This is accurate for all people, but Autistic people and those who experience sensory processing differences for other reasons, may experience sensory information in different ways. Not just internal body signals; but noise, taste, touch, smell and visual information too. We may experience sensations intensely, or they may be muted. Sensory information could be distorted or fragmented, or take a long time to process.

My personal experience of pain tends towards not noticing it until the sensations are very strong. This is not because I am some brave superhero – it’s just how my sensory processing system works. My brain requires lots of interoceptive sensory information to register something is happening. Conversely, my tactile processing system needs only a tiny bit of sensory information to register with my brain and I can incorrectly appear to be oversensitive to labels in my clothes, or having wet hands for instance.

How I experience pain:

Just because I may not have a strong awareness of something in my body hurting, doesn’t mean I am not in pain. If a medic asked me to use a pain scale to rate the severity of my toothache this morning, they would have been met with a puzzled look and a “I’m not sure….It’s not too bad, I suppose” – I certainly could not have attributed a number between 1 and 10 to indicate how severe it was. In fact, the stress of trying to define what was wrong and where in my body that sense of something being wrong was located, could have pushed me into complete overwhelm. But I was in pain – only I didn’t feel it in the conventional way.

On Saturday I recognised a change in my mood that was not related to any circumstances or life events – in fact I was having a great day with lots of absorbing activities to occupy me. I found I could not regulate my sensory processing system – and as someone who is proactive in sensory regulation and incorporates it as part of my lifestyle, this concerned me. It was dramatic enough to make me realise that something potentially serious was going on; and because I have an awareness of how I experience pain and illness, I explored whether it could have been caused by pain.

I scanned through my whole body, inch by inch; noticing whether I could detect any sensations, or none at all.

I tried to put my “something is wrong” feeling into words but couldn’t. So I didn’t push myself.

I distracted my mind from disappearing into my black mood in search of why “I” am so wrong, and brought my awareness back to my body. This required a huge leap of faith on my part as I have experienced extensive negative feedback from professionals about my insights into my own needs. However, I know myself well and there is little to be gained by stressing over whether I will be believed or not – or whether I am making a fuss about nothing. My dysregulated sensory processing system and my distressed emotional state that could not be regulated by my typical everyday self-care, told me that I was most likely unwell or in pain.

I checked I did not have Covid-19 and my lateral flow test was negative. I tried to notice any symptoms, such as a runny nose or a cough, or limbs that were an unusual shape, but couldn’t detect anything of note.

I considered the type of negative thoughts I was having and rather than challenging them or getting drawn into them, I stood back and wondered what they were trying to tell me…

Noticing where my pain is:

Using my skills in logic and analysis, observations from years of supporting people who communicate without talking; and combined with past knowledge of myself, I considered I may have toothache. I had needed dental treatment in the summer, so this seemed a strong possibility.

I examined my mouth and face in more detail. I noticed that if I touched my jaw I felt slight pain. I looked in my mouth but saw nothing that indicated swelling or infection. As the day wore on, and into the next day I found that I noticed slight earache as well as the sensitivity when I touched my jaw. It was as if the overwhelming and widespread feeling of something being wrong was settling in one place. The sensation was certainly not pain that could be classed as severe, but I recalled how the abscess that had required a tooth extraction in August had created similar mood changes and sensory dysregulation in my body.

When I visited the dentist in the summer they tapped my teeth and explained that if there was a problem I would soon know! I did not react with a typical pain response but the x-ray showed what they referred to as a pathological cyst. When I viewed the x-ray back in the summer, it enabled me to place my pain in my body, and my mood symptoms lifted, I was more able to regulate myself and I began to notice my toothache and could treat it with painkillers.

I decided I would telephone the dentist on Monday morning. I pushed aside my anxiety about making a fuss and made a plan. I knew the dental receptionist would ask if this was urgent and would qualify that by asking if the pain was so severe it was keeping me awake. This line of questioning delayed my treatment in the summer because I answered honestly and said “no”. However, I realised back in the summer that I was incorrect with my response of no. The pain was preventing me sleeping because I was having nightmares, distressing thoughts, and panic attacks. These symptoms that are typically associated with mental illness are closely linked to physical illness in my case. My nights have been disturbed for some weeks and although I have not had a sensation located in my mouth that has kept me awake, the pain has kept me awake by manifesting in other ways.

The receptionist was accommodating and listened as I explained that my pain was as bad as it had been in the summer. Fortunately I could have an appointment later that morning with the dentist who knew me well. I have very specific support needs when visiting the dentist and was relieved to be seeing someone who knew me.

My appointment resulted in confirmation that my cyst was still there, in the same place and the same size. The extraction and weeks of antibiotics had not healed it. Further treatment is booked and I left feeling reassured.

Conclusion:

I am learning to trust my own knowledge of how my body works. This is no easy task when my life has been filled with invalidating comments, disbelief and failure to address my needs.

Some people work hard to identify sensations in their body and name them “correctly” and describe them so they fit mainstream expectations of how bodies work. I feel no need to do this. I prefer to develop my self-knowledge and accept this is how MY body and brain works. I would like more people to accept the way my body works is “normal for me”.

At times it may be helpful to frame my experiences in ways that clinicians accept and understand, in order to receive timely and responsive treatment, but I do this purely for that reason and I would love to be able to use my own language and lived examples, and be taken seriously. Sadly, if I explained I had mood symptoms and thought it was actually toothache, I would likely be seen as neurotic. I get better treatment by stating I am experiencing symptoms of severe pain. Those times when I am unwell or in pain are not the best time for changing attitudes!

Locating the pain reduces the risks that come from being so dysregulated. It also enables the pain to be treated.

It is interesting to note how once I have located where the pain is likely to be, I start to feel it slightly. When the location is confirmed by x-ray or other tests, it begins to hurt more. The overwhelming sense of not being ok that fills my body, condenses into its correct place. Clinicians can really make a difference to people like me by listening with interest and without judgment. Learning to explore your whole body and notice anything different can be useful too. I have used mindfulness for decades and find body scans help me. Pain scales are not a good indicator of severity of pain for some people – what is more useful is having trust in the person’s ability to notice that something is not right for them – and then support them to explore it.

Categories
Autism interoception wellbeing

Saying “ouch!” in all the wrong places …

Ouch!

I do feel things you know! I may have hiked several miles along the Welsh coast path – and back again – to see if I could “walk off” my dislocated knee. I may have been “incredibly strong and brave” during labour and breathed through my contractions without a cry passing my lips. And I even spent a week away at a children’s camp aged 11, with a broken arm that everyone thought was “nothing to worry about” because whilst I told them I was injured, no one took me seriously because I just wasn’t saying ouch in the right places. I was still hurting though.

Conversely, I can also stress about sensations on my skin that doctors can find no evidence for; and feel so unwell before a thunderstorm I want to curl up in a ball and hide away. More than once I have visited the doctor with physical symptoms only to be told there is nothing wrong with me.

Just because I don’t “feel” pain in a conventional way, doesn’t mean I am braver, weaker, stronger, or more sensitive than other people. When I am unwell or injured my symptoms may not even be experienced as pain – frequently my mood and emotions let me know that something physical is going on. However, when I am distressed or emotional, these feelings may be experienced as physical pain – or more commonly as sensory processing disturbances. Changes to my vision or vestibular processing for instance.

I can’t explain how this works but I accept it in exactly the way I accept my other sensory processing differences. Synaesthesia is widely documented and believed as a variation on human experience. I experience some music and colours in this way myself. I put my unusual experiences of pain, illness and emotions down to a similar phenomena.

I have learned to trust my own experience of my body rather than that of medics and interpret my symptoms accordingly. Unfortunately I am rarely believed. I therefore have a dilemma: do I continue to say ouch in the wrong places – and be viewed as a hypochondriac and dismissed as having nothing wrong. Or do I tell the truth and describe my symptoms honestly and inform the doctor of what the symptoms are most likely indicating – leaving myself open to being viewed as delusional. This is a very likely outcome of me sharing my symptoms truthfully with doctors, because I have a psychiatric history. Or do I lie and try to use the words and terms they’d understand – for example, I could pretend that I was feeling the pain of my injury far more severely than I was. This isn’t an option for me – I can’t justify lying in this situation.

Or do I avoid seeking treatment for any physical or mental health issues I may be having? Do I join the many other autistic people who have poor health outcomes, just because my atypical experiences are not believed – despite me clearly being lucid, articulate and reasonable. Goodness knows how people who are less confident and articulate cope!

Caring for someone else who says ouch in the wrong places…

For a long time I assumed I was either totally unfeeling – or totally oversensitive. I also believed a lot of lies I had told myself or believed from others. Sometimes I assumed I was somehow stronger and better than other people who appeared so weak and lacking in emotional strength to me – those people who got sentimental about things, or lost their tempers, or got flustered in a crisis. At other times I felt weak and pathetic, and the worse human being on the planet because I couldn’t cope with the little things that didn’t bother other people, or I’d know something was wrong with me, but no one would believe me. Perhaps I was mentally ill; perhaps so damaged I was beyond repair? A fraud; an alien; evil. I had a perfectly logical reasoning for each of these potential explanations based on comparing myself to others and believing the lies I told myself or others told me. Of course, none of these were true.

Then I had a child. And there was suddenly another human who was perfect, untainted by the world, definitely not an alien or evil – but very much like me. Once I had spent a very long time coming to the conclusion that I hadn’t damaged him in some way, we sought clinical input on his differences – those differences that were very similar to my differences. And we learned amongst other things that he is autistic.

It didn’t take long to realise that I am autistic too.

Our son has better health outcomes because we understand that not everybody experiences things in the same way. All of us process sensory information in individual ways. Whilst there is a typical range of sensory experiences, most people have experienced unusual sensory processing at some point and can relate to the experiences that many autistic people have everyday. Most of us will relate to how our hearing becomes acutely sensitive when we are scared and even the quietest noise can startle us with how loud it sounds; or the feeling of “sea legs” when we have come ashore after being on a boat and our brain is telling our limbs that everything is still moving.

Autistic people may experience these extreme types of sensory processing experience as our “normal”. We may process the world in a muted way where sounds, lights and smells barely register with us – or we may experience sounds, lights and smells as intense or even painful sensations. Most of us experience a mixture of these variations – and they may fluctuate depending on what else is going on; our environment, mood and general wellbeing etc.

Knowing how we feel physically and emotionally is determined by our sensory processing system. The sense that really plays a part in knowing when to say “ouch” is interoception. Our interoceptive processing system enables us to recognise body signals like being hungry, tired, needing the toilet, pain and emotions. Just like the other senses it can work within a fairly typical range – or it can be muted or intense – and remember this can vary for each of us on a day to day basis too. Have you have ever not noticed you need the loo until the last moment because you have been so engrossed in what you are doing you haven’t recognised the signal in your body? Or known something was up but you couldn’t work out what? Or realised you were tired or hungry. That’s interoception.

Learning about interoception has taught me an important life lesson. Compassion. And also self-compassion. I am no better or stronger than anyone else just because I don’t feel pain from injuries unless they are very serious. Nor am I a pathetic loser because the sensation created in my body by needing to wait for something is so intense it makes me feel edgy, uncomfortable and completely unable to shift my focus onto anything else. I may not feel love for other people as a sensation, but I absolutely love them with all my (very logical!) heart.

And just because other people may not take my experiences seriously doesn’t mean I should disregard those experiences.

All human beings have basic needs – warmth, safety, food, love and so on. When we look after other people we need to meet these needs, regardless of whether the person we are caring for is aware of the need. A baby cries so we check out whether they need feeding, changing or a cuddle. If our child doesn’t notice they need a drink, we still give them one – to do otherwise would be neglectful. Our child may not notice they have bruised themselves falling over – but we still check them out for injuries and treat them with care. A child that may not be feeling an emotion we might call “love” or who may not turn to us for comfort when they are upset, still needs to be shown love and comfort – even if this is on their terms rather than our own. Perhaps this isn’t through cuddles and praise, maybe it’s through listening to them talk about their favourite interest or letting them press their feet into your tummy while they play on their own with a toy – different sensory processing systems require different responses.

Having a child made me appreciate the disservice I was doing myself by viewing my experience of interoception with a judgmental attitude. It’s not surprising – emotions are what makes humans most human. If I asked you to describe a robot, it would probably look human and have all the various sense organs that humans have and do very humanlike things, but lack emotions. My unusual auditory experiences for example, are much more accepted than my unusual interoceptive experiences. Ultrasensitive hearing, the ability to smell someone in the next room, or instantly spot a typing error on a printed page are unlikely to result in judgmental labels such as ‘evil’ or ’emotionally unstable’. A lack of typical emotions seems to equate to an almost robot-like lack of being human. And in my experience it is easier for people to treat others badly if they don’t view them as human.

I need to treat myself with the same compassion that I treat other people. Extend my willingness to meet other people’s needs in unconventional ways with meeting my own needs in unconventional ways when I need to.

Soothing my own “ouches”

Once I had accepted that I wasn’t in fact evil, damaged, an alien or any of the other explanations I gave for my undiagnosed autism, I set about understanding how I actually process the world. It’s been a tough journey, but thankfully is getting easier.

Resilience is often discussed within mental health. Fortunately we can learn to become more resilient and this is all the easier when we explore this from an autistic rather than neurotypical point of view. A person whose experience of sensory processing is one of Sensory Trauma and constant invalidation from clinicians is severely disadvantaged. But many autistic people are fantastically resilient by the sheer fact they are functioning in a world that is biased towards the majority of people who are not autistic. We also tend to be able to self soothe by using our bodies and senses to regulate ourselves – this may be through our intense interests, our repetitive movements, or our ability to follow routines. Sadly these strategies that promote autistic resilience can be seen as part of the medical model disorder of autism. Fortunately autistic voices are getting stronger and society is recognising the social model of disability and the unique strengths that autistic people possess.

But it still hurts!

At this moment I have little faith in the medical system. I continue to say ouch in the wrong places because that is how my sensory processing system works. It is not broken so cannot be fixed. I have always been like this and always will be. I refuse to lie and pretend and say ouch in the “right” places.

The world needs to change. I am unable to receive the treatment I require for physical or mental health issues because I cannot articulate them in the accepted language of clinicians. I prefer to avoid seeking help because of past experiences of being mislabelled and badly treated. Although my autism has now been correctly diagnosed, it was overshadowed for many years and those past labels will always be there.

It is unlikely that in my lifetime I will be able to say ouch when I hurt, and describe my physical and emotional experiences in my own genuine way and be listened to and accepted. What a shame – and how shockingly bad that is for a society that sees itself as modern and inclusive.

There are no easy answers – I keep chipping away at the system when I have the energy – and keep showing myself compassion and self-care. If this blog resonates with your own experience or you wish to share it to spread the message further, then please go ahead and share.

Interoception is the sense most recently added to the five senses I was taught about at school, plus the two others added more recently. Learning more about this eighth sense could make a big difference to many people’s lives. Understanding that we each have different levels and ways of feeling things is as significant as realising we each hear and see things differently. We need interoception to be considered alongside all the other senses – and without judgment.