From Awareness To Agency. The knowledge behind an immunological condition

I recently came across a conversation on YouTube between RD Michelle Shapiro and Olivia Amitrano, both of whom have MCAS, Mast Cell Activation Syndrome. MCAS is a rare condition caused by overactive mast cells, leading to repeated episodes of severe symptoms that can affect multiple parts of your body. (If you want to learn more, the Cleveland Clinic page on MCAS is comprehensive and accessible)

I started listening because MCAS is something I am currently investigating in relation to my own health.

What interested me most about their conversation, however, wasn't necessarily learning more about MCAS. It was hearing them describe what their experiences actually felt like. There were so many moments when I thought: yes, exactly that.

They talked, for example, about physical anxiety. Both had found that taking Pepcid, or Famotidine, helped considerably with this and with brain fog, even though it didn't necessarily help their stomach symptoms very much. This is almost exactly what I have experienced. I started taking Famotidine because I wanted to improve my stomach burn, but one of the most noticeable effects was somewhere else: the physical anxiety and brain fog I experienced became much better.

What was particularly interesting was hearing them describe how they had learned to recognize this anxiety as something physical. One of them talked about searching through her thoughts, trying to find what she was anxious about. Was it this? Was it that? Eventually she realized that she couldn't find a thought that corresponded to the feeling. Her body felt anxious, but mentally there wasn't anything she was particularly anxious about.

I know this experience very well.

For a long time, I thought I was someone who had panic attacks. Then at some point somebody told me that AVNRT, the heart arrhythmia I had, can feel like a panic attack. That made me start paying more attention to what I was actually feeling.

There was another small realization at the dentist. I had always thought I was extremely anxious about going to the dentist. I also almost always needed something done, which meant receiving local anaesthetic. At some point I started asking for anaesthetic without adrenaline. Suddenly I could distinguish much more clearly between being nervous about the dentist and the very physical sensation that the adrenaline had been producing in my body.

It sounds obvious in retrospect, but it wasn't obvious when I was experiencing it.

The same is true of brain fog. It is a term that gets used a lot, but it doesn't really describe what it feels like. In the conversation they described something heavy around the head, almost as though something were in front of the eyes. It can come with a feeling of being gloomy or unmotivated, but again there is something distinctly physical about it. I recognized that immediately.

There were many other things I recognized: POTS symptoms, coat-hanger pain, aching hands, joints and muscles, reactions to temperature, travel and altitude, and unexpected reactions to vitamins, supplements or medication. Some of these experiences are newer for me. I wasn't a fatigued child or teenager; fatigue and brain fog came later. I have always experienced quite a lot of pain, on the other hand, and at some point had to learn that being in pain so frequently isn't simply normal.

Perhaps this is part of why listening to other people describe their experiences can be so useful. It doesn't necessarily give us an explanation. It can give us enough language to ask a better question.

Someone else describes a sensation and suddenly something that has been vague becomes easier to distinguish. It helps me see my own experience more clearly, find vocabulary for it and take it seriously rather than immediately writing it off. It doesn't mean that the other person's explanation must also be mine. Recognizing an experience is not the same as establishing its cause.

This distinction has become increasingly important to me.

One of the women, for example, has Ehlers-Danlos syndrome and described having an unstable neck. After a massage, her neck became so problematic that it had to be braced, and this also affected her cardiovascular system and aggravated symptoms she associated with POTS.

I had an immediate Aha moment when I heard this.

During the period when I was having severe problems with my heart and POTS-like symptoms, before eventually having an ablation for AVNRT, I kept saying that something didn't feel right in my neck. I couldn't explain it properly. It felt as though something happening there was connected to what the rest of my body was doing.

I don't have Ehlers-Danlos syndrome as far as I know, and I don't know whether what happens in my neck has the same mechanism as what she described. But I have been told by several orthopaedists that my neck is unstable, and I know that I have to be careful with stretching. Sometimes I stretch only slightly too far—I often don't even notice it at the time—and afterwards my muscles become more rigid and painful rather than less.

Hearing somebody describe an experience that resembled mine didn't suddenly tell me what is happening in my body. But it made an observation I had repeatedly made feel less unusual and worth continuing to pay attention to.

There is a difference between saying, "My neck is causing this," and saying, "Every time this happens in my neck, I notice something else happening too." The first is an explanation. The second is information.

Learning to make that distinction is, for me, part of body awareness.

When physical experience becomes personality

One story in the conversation stayed with me for another reason. One of the women had experienced symptoms since she was very young. For years, she thought she was an introvert. Being around and communicating with other people depleted her so much that it seemed obvious that she simply wasn't a very social person.

As she became better at managing her condition, this changed. She discovered that she was actually very extroverted and that being with other people made her happy. Something she had understood as part of her personality had, at least partly, been shaped by the amount of energy her body had available.

I found this fascinating because I recognize something of it in myself.

Communication can require an enormous amount of energy from me, particularly indirect communication through messages, email or phone calls. There is a lot to interpret: what does the other person mean, what might they be thinking, how should I respond, what atmosphere am I creating? When I have little energy available, that processing can become exhausting.

And yet I love being with people.

I have learned that going out can actually give me an enormous upswing. I just need to understand some of the physical conditions that make it possible. I need to have eaten a lot before, need to be warm. Comfortable clothes make a difference. It helps to know that I can sit down rather than having to stand for hours. If I reduce some of the physical stress around a social situation, being with people can leave me much happier and sometimes more energized.

Understanding the body, in this sense, doesn't necessarily mean doing less.

Sometimes it allows me to do more.

Awareness as a skill

This is probably why the conversation connected so strongly with something I have been thinking about for years through movement and that I am currently writing about: awareness and agency.

"Listening to the body" can sound vague. For me it has become something quite concrete. It means learning to notice differences. What does something actually feel like? When does it happen? What happened before it? What happens when I change something? Does rest help? What kind of rest? Does movement make it worse, or does a particular kind of movement make it better? What happens if I eat before going somewhere, dress more warmly or sit instead of stand? Over time, this produces information.

It also requires learning how much importance to give that information. Not every sensation needs to be analysed. Not every signal means something is wrong. Paying attention to the body can become another source of anxiety if every change is treated as a threat.

That differentiation has to be learned too.

Sometimes I need to react. Sometimes I need to rest. Sometimes I know a particular sensation and can simply let it pass. And sometimes I can be positively surprised.

I find that last possibility particularly important. Awareness shouldn't only produce an increasingly long list of things we cannot do. If we leave room for experience, the body can also show us that something is possible that we didn't expect, that circumstances have changed, or that something we thought would exhaust us actually makes us feel better.

This is where awareness can become agency.

The better I understand what I am experiencing, the more choices I have about how I respond to it.

Not becoming the condition

There was also an ease in the way the two women talked about MCAS that I liked. They took it seriously and had clearly spent a considerable amount of time learning about their bodies, experimenting and going through trial and error. But they didn't speak as though the condition defined them. But it was something they were dealing with, that could change, become more manageable and potentially improve.

I find that perspective valuable, particularly when physical experiences have existed for long enough that they start becoming mixed up with our understanding of who we are.

Am I an anxious person, or does my body sometimes produce a sensation that feels remarkably like anxiety? Am I unmotivated, or am I experiencing the particular heaviness I have learned to recognize as brain fog? Do I not want to go out, or does my body need different conditions to make going out enjoyable?

Of course these distinctions aren't always clean. Body and mind continuously affect each other. Physical states change how we think and feel, and psychological states have physical effects. But becoming better at distinguishing what I experience gives me more possibilities.

Perhaps that is what I valued most about hearing this conversation. It wasn't that somebody else could tell me exactly what is happening in my body. They couldn't. I am still in the process of finding that out. It was the series of Aha moments that came from hearing other people put experiences into words that I recognized.

There is something reassuring about discovering that an experience you have struggled to explain isn't quite as unusual as you thought. It can make you more confident in your own perception without requiring you to already have all the answers. And perhaps that confidence is one of the foundations of agency: learning to trust what we notice, remaining curious about what it means, and knowing that neither our current limitations nor the explanations we have for them necessarily have to be set in stone.