My body is frustrating. My body is amazing

Listening to the wisdom of my body to learn what I need, including potato chips.

Before getting into the practicalities of how I apologize and forgive or accept, I want to talk about my body and how it relates to apologizing.

Paying attention to my body

My body often knows what my boundaries are, even when I haven’t thought them through and figured out what they are intellectually. I instinctually recoil, have a meltdown, start to cry, go numb, have a panic attack, start to sweat, get a stomach ache, and/or feel combative, among other clues. These are ways my body tries to communicate with me, and it has been worth the effort to figure out what my body is trying to teach me.

From what I have learned, many of us (including me!) have experiences that aren’t typical, but are real. We may have been taught to ignore the communications from our bodies by people who don’t experience the world in the same way¹. For example, I am extra sensitive to light and often prefer to stay indoors because being in bright sunlight is literally painful. Since most people feel better in the sun, I have experienced pressure us to go outside in the sun to feel better – that it will help my mental health. I assumed they were right and that there was something wrong with me mentally for not always liking the sun. I tried to convince myself that I should spend more time in the sun. To do so, I often dissociated from my body and the pain. I now understand that my sensitivity to the sun, due to mast cell sensitivity, is different than others, and I make my decisions based on what my body tells me. I try to always remember to wear sunglasses and a hat, and I go inside when it feels too much for me to handle.

Another common way we are taught to ignore the wisdom of our bodies is through food and eating. We may have been forced to clear our plate, even if we weren’t hungry. We may have been forced to be polite by eating all foods served to us, even if the taste and texture was disgusting and painful to eat. There are so many food textures, especially fruits, that are revolting to me. Again, there is physical pain when I do eat things like tomatoes, kiwi, and plums. I’m happy so many people get to enjoy these foods, but I’m not one of them! And I’m no longer going to feel guilty about that.

As an athlete or sports fan, we may have learned the lesson that we should ignore and play through our pain. In any career, we may have been taught to work through illness rather than take time off to rest and heal. Due to a lack of paid time off, working through pain and illness may have been a necessity. I love watching baseball for so many reasons, but I am becoming increasingly uneasy about the workload expected of these players. My understanding is that all of them are playing through aches and pains by the end of the season and I hate that as a fan I am part of the normalization of that.²

Alexithymia

I’ve recently learned about alexithymia, which is a term that was first coined in the 1970s that basically means a person has difficulty perceiving and identifying emotions. It can be something we are born with, or a trauma response. I think my examples above induce alexithymia as well, although I don’t know if there’s research on that. It can make it harder to, for example, determine if the body sensation I am feeling is anger or fear or hunger. I often don’t realize I need to pee until it is urgent, which could be why I peed my pants up until grade two, which at the time was embarrassing!

These days, I use wheels of emotions like the one below to help me pinpoint what I’m feeling. I don’t know why this works, but if I feel a sensation in my body and read the names of different emotions, often I will feel something in my body that tells me: “yes! That’s what I’m telling you!” Sometimes it is a deep breath, sometimes a shiver. Often it’s tears. On occasion it’s a smile.

It has taken time and effort to relearn the wisdom my body shares with me, so I’m trying to be gentle and patient with myself. When I notice a new sensation in my body, I make note of it and add the context of what I am thinking, feeling, and doing. With practice, I’m becoming able to notice patterns and learn my body’s language. When my body doesn’t feel “right”, it’s a good sign that a need isn’t being met and a boundary has been crossed.

Since boundaries are fluid and depend on context that is constantly changing, it’s probably impossible to anticipate every boundary I have. But by trying to be in a constant dialog with my body, I feel the notification from my body when a boundary is crossed. This notification gives me an opportunity to make a change and accommodate my needs. I’m not an expert at this yet – far from it. My body has experienced so much trauma over the years that many notifications from my body feel like alarm bells rather than the ping from a text message. I still often react from this place of dysregulation, rather than responding from a place of safety. I hate that people I care about sometimes are on the receiving end of this fear and anger and I’m really grateful when they stick with me and help me feel safe.

Undiagnosed Illness

Sometimes people do unusual things, and we can’t explain why. It could be that we have an undiagnosed illness and we instinctually do things that feel good. For example, I have spent most of my life sitting cross-legged in chairs or with my feet up on the table. I’ve always loved lying down with my legs on the wall. I’ve often craved potato chips. All this, only to learn later in life that I’ve likely always had a mild form of POTS/dysautonomia that was exacerbated by my COVID infection.

My “picky” food preferences are also likely caused by Mast Cell Activation Syndrome (MCAS). I’ve had experiences in the past where cold temperatures and exercise have both led to me breaking out in hives, so it is likely I have always had mast cells that release inflammatory chemicals more than necessary.

In medicine there is a saying, “when you hear hoofbeats, think horses not zebras”. This means that doctors should assume the cause of symptoms is due to a common problem, not a rare disease. But this does not mean that rare diseases don’t exist. And if we further the analogy, if you are in the grasslands of southern or eastern Africa, it would make sense to think the hoofbeats are from a zebra! Illnesses like POTS, MCAS, hypermobility, and even epilepsy are common in people with autism and ADHD. I would love it if medicine didn’t default to anxiety for most symptoms they can’t explain. My anxiety went down dramatically once I started to treat my dysautonomia and help more blood and oxygen get to my brain. Of course my body feels panicked when it doesn’t get adequate blood, oxygen, and nutrients delivered! And I’m so grateful that I understand that message now. Our bodies will communicate when a need isn’t being met, and there are often medicines and/or non pharmaceutical interventions that can bring relief.

One thing I’ve learned is that my body needs extra salt to help increase my low blood volume. My cardiologist has prescribed me to consume extra sodium to improve my health and it does help. Consuming extra sodium means I also have to consume extra potassium to keep those electrolytes in balance. Potatoes are an excellent source of potassium. Potato chips are an excellent source of both sodium and potassium. So, potato chips are a health food for me. I feel better physically and mentally when I eat chips. This seems to outrage some people, but I’m not going to apologize for the needs of my body. I’m always grateful when people respond by saying something like, “oh interesting! I’m more used to hearing that we should limit our sodium” and leave it at that without trying to convince me to change my eating habits.³

There is still so much to learn about the human body and particularly bodies that are underrepresented in research.⁴ Plus, the information learned from research doesn’t always make it to our healthcare providers in a timely manner. Unfortunately, this means that I don’t fully understand the causes or mechanisms of my symptoms, but I can still trust my body’s wisdom. I am experimenting with different medications and supplements. I am learning from the experience of others. I am taking note of what helps and what makes me feel worse. I am finding what I need to feel good, and I’m honouring my body’s needs.

Every body is different and I’m learning to be the expert of mine. What’s right for me is not necessarily what’s right for others, so I’m doing my best not to compare or give advice as if it is universal. Others might give me advice based on what’s best for their body, and I’m always interested in learning what helps others feel good. But now I listen to their experience and consider if it would be a good match for me before assuming it is. If my body doesn’t respond similarly, it doesn’t mean my body is a failure, just different.

My body helps me to know when to ask for apologies. My body is not something I need to apologize for. I truly believe that on a cellular level it is doing everything it can to survive, adapting to the environment it lives in and the elements/nutrients I give it. I have developed a deep gratitude for everything it does and I’m constantly in awe at what the human body is capable of, including mine.

1. Often taught without malice, they might just find it hard to understand how different our experiences can be

2. I also wish sports leagues would implement an “infectious disease” injured list that would allow players to stay home, rest, and not spread their illness to their colleagues. I was so disappointed and angry with the Blue Jays for allowing an unnamed illness to spread through the clubhouse for weeks earlier this season. I also suspect it is the reason so many of their players have underperformed this year.

3. What I would love the most though is for someone to ask if I have the time to explain POTS and MCAS to them in more detail because I can talk about these subjects for hours!!!

4. which is basically everyone who isn’t a North American white cis male.