Why you may hesitate to get your hair cut as a TBI survivor: Spoon Theory

Have you ever hesitated to get your hair cut? Or colour your hair? Or even wash it? It can sound strange but these normal life activities can be quite challenging for a TBI survivor. Everyday activities and social interactions often have a weird undertone after a brain injury. It took me a while to find ways to make them work for me. I want to share my tips with you so you don't have to wrestle with the simple things like I did :)

When I first injured myself, I listened to a podcast about another person living with post-concussion syndrome and was surprised at first to hear she couldn’t stand showering because the sensation of warm water hitting her skull was too intense: it felt painful as if it were burning her scalp. But intuitively, it made a lot of sense to me. There’s a biological term for this — misinterpreting tactile stimuli — and it is a known symptom of brain injury.

My version of misinterpreting tactile stimuli is ultra-sensitivity to touch. Especially at the beginning, having my hair tied back, a headband on, glasses on my face, or even my partner’s hand resting on my head as we fell asleep was far too powerful a feeling for longer than a few seconds.

Physical fatigue gets layered on top of this ultra-sensitivity. In the first three years, colouring my hair at home was an activity I would “save up spoons for.” If you are not familiar with the idea of saving up spoons, here is a little overview of this incredible and simple concept that comes from Christine Miserandino who has lupus which causes chronic fatigue and pain. She developed this concept while explaining her disability to her friend in a café, demonstrating with the spoons on the table:

- A person has roughly the same amount of energy each day.

- Each unit of energy is represented by a spoon.

- Healthy people have more spoons (energy) than those with an illness/injury that causes chronic fatigue or chronic pain.

- Some activities cost more spoons than others: going to and from a noisy hair salon for a 1 hour haircut is 4 spoons, washing your hair at home is 2 spoons

- A person with a fatiguing chronic illness/injury needs to make decisions about which activities to spend their limited number of spoons (energy) on.

If you are at all like me and doing something as normal as colouring your hair is too intense a sensation, totally exhausting, and/or causes your symptoms to flare up, you are not alone!

With the exception of doctors, I didn’t want ANYONE touching my face, head, or neck in the early years after my injury. So how did I get my hair cut? My visits to the salon went down to once a year and when I did go I found it really unpleasant. My trusted salon was now too stimulating and I no longer had emotional energy for the socially awkward owner.

I hesitantly tried another salon and talked about my head injuries with my stylist there. But as a way to emphasize whatever she was saying, this stylist repeated tapped my head with her scissors and comb throughout the appointment. Rather than explain why that didn’t work for me, I decided I’d never go back.

Ghosting these hair professionals left me feeling powerless. I realized I was not asking directly for what I needed and had made a lot of assumptions. Even though it seemed obvious to me, telling folks I had a brain injury was not enough for them to understand that I didn’t want my head touched excessively.

So when a friend recommended my new stylist, Julie, I was excited to learn that she uses a transparent, hourly, gender neutral, and gratuity-free pricing system. This indicated to me that Julie was invested in openness and making her clients as comfortable as possible. When I settled into her chair, I explained that my head is sensitive from TBI. And because I came right out and said it, Julie shared her thoughts. She explained that she offers silent appointments and her hair dryers are ultra-quiet models. She checked in with me about the water temperature and the scalp massage. It was like I had finally been seen!

If you are leery about going out and having a service like a hair cut, here are my top three tips:

- Find a person who probably “gets it” based on their values as a business owner. Look for clues that the entrepreneur wants to be accessible and inclusive.

- Have an open conversation with them about your challenges and explain what you need. A good service provider will collaborate with you to make you comfortable and not be intimidated by the request.

- Save up your energy and don’t plan anything in the hours before or after. Make the hair appointment a standalone activity and be prepared to rest after. That may have been a big outing!

And remember: you don’t have to remain loyal to a business if the environment and service are no longer a good fit for you post-concussion. Your comfort and wellbeing come first.