This post is part of an on-going series exploring the ways in which marginalized identities and oppression play a role in medical care, particularly for disabled people.
Over the weekend, I managed to injure myself not once, but twice, within less than 24 hours. The first time I stepped on my friend’s poor cat who happened to blend in far too well with the décor. While trying to retract my ankle from his sunken in claws, I wrenched the right side of my body where I also happen to have a hemorrhagic cyst. The following day, I was attempting with all of my coordination (which is severely lacking) to maneuver over a baby gate when my foot caught in a hanging cord. It was one of those moments when time seemed to slow and I knew what was about to happen but had no way of stopping it. Thus I went crashing down to the floor, taking the baby gate with me, and landed directly on my left hip bone.
These accidents have left me in quite a bit of pain. Now, I’m always in some level of pain due to chronic illness, but most of the time I am able to handle it. However, whenever there is a new pain, something out of the ordinary, I find it exceptionally hard to tolerate. Unfortunately, yesterday, this led to sensory overload and a meltdown. This got me thinking about the ways that chronic illness and autism intersect and interact.
For many autistics, our sensory systems function differently that a neurotypicals. We can be hypersensitive or hyposensitive to stimuli and it can vary based on the type of stimuli as well as the moment or day. For instance, I am hypersensitive to sound most of the time, but there are points where I become hyposensitive and crave extra auditory input. Someone could be hypersensitive to visual input and touch while hyposensitive to sound a majority of the time. If this seems vague, it’s because each autistic persons experience with sensory input is unique and can be variable for that person.
When we think of our senses, we often think of the five we were all taught as children: taste, touch, smell, hearing, and sight. However, we have more senses than this such as proprioception, temperature, and, as is important for this discussion, pain. While we don’t often think of pain as a sense, we have sensory neurons dedicated to pain reception.
As a part of my experience of autism, I experience sensory overload when I have more sensory input coming in than my system can handle. This can lead to meltdowns or shutdowns. Often, when I feel myself starting to overload, I look for ways to cut down on visual input or auditory input as I tend to be more hypersensitive to those things. However, I usually forget that pain is another one of my senses that is contributing to overload.
There is often a vicious cycle for those of us who are autistic and suffer from chronic pain. Pain, particularly new or different pain, can lead to overload which can lead to increases in pain which worsens the overload until a meltdown/shutdown is unavoidable. Sensory overload often makes us more sensitive to further stimuli which in the context of chronic pain means an increase in pain levels. Nothing else may have changed physically, but the pain feels more and more intense which makes the overload worse.
Hypersensitivity to stimuli is an aspect of autism, yet, in society, this is often shamed, particularly hypersensitivity to pain. Having a high pain tolerance is often something that is bragged about and seen as a sign of strength. Those who are hypersensitive to pain, particularly those who are perceived as female, often have their pain downplayed and dismissed. Why? How is my pain, which I feel so intensely that it drains me of strength and energy, lesser than anyone else’s pain?
Pain is subjective. We each feel pain in our own way and we cannot truly know how someone else’s pain feels. Whether someone feels minimal pain or is in pain constantly, it is not up to others to dictate the severity of pain. If someone asserts that their pain is a 10, they should be believed and treated with care, whether that pain is from a broken leg or stubbed toe. While a stubbed toe for one person is nothing, to someone else it can be excruciating and neither experience should negate or invalidate the other. It is not a sign of strength to experience less pain than someone else.
Pain isn’t a competition. Whether you are hypersensitive, hyposensitive, or have average sensitivity to pain, your pain is valid. We need to move away from the ableist idea that a person’s pain tolerance is a sign of their character or strength. Whether pain is due to substantial injury or a nervous system that hypersensitive, that pain is real and deserves to be treated as such.