Identity is that it is a very personal and individual thing; this blog post will give you a deeper peek into my own chronic illness struggle. However, the identity shifts that inevitably must happen alongside such health status shifts, I argue here, is the universal part. There is a grief to losing parts of yourself when health changes that was certainly a part of my experience. For me, this was one of the hardest facets of coming to terms with my changing health. It took me a long while, longer than maybe it should have, but also exactly as much time as it needed to.

The thing about identity is that we attach emotions to those qualities. We use them as building blocks towards a perception of who and what we are. The pieces of our identity are kind of like the scaffolding upon which we either like or maybe dislike ourselves. In my case, after 18 years as a massage therapist, a yoga practitioner and teacher, and an acupuncturist, my ‘healthy’ label was a quality that I took pride in and leaned on heavily throughout my career. Being stripped of that ‘healthy’ label was a hard blow to my ego, which really took some time to process. It wasn’t just a label I carried and took pride in, but also many of the people I associated with as well due to my occupation and my interests shared in that. Identity shifts are not just about us and how we relate to ourselves, but also how we relate to each other. They can even be the bedrock upon which friendships are built. So being forced into these shifts can also alter or challenge the relationships in our lives, adding to a sense of self-consciousness through these changes.

That was only one of the blocks which was removed from my identity as I navigated worsening POTS symptoms (or postural orthostatic tachycardia syndrome) while I was awaiting diagnostics and care. Other blocks which I felt faltered included: reliable, strong, efficient, capable, independent, active, a go-getter, and fun. I might have people in my lives that would disagree and try to shut me down for even saying that those pieces of my identity faltered. Even if they weren’t completely gone or aren’t completely gone, I still must now understand them in new ways. These were all aspects of myself that I felt prideful of and that contributed to my liking of who and what I was.

I did not respond well to early medication trials, and so the beginning of figuring things out left me abruptly less capable than I was used to. At its worst, all I could do was play Lawn Mowing Simulator all day because literally everything else made me so dizzy (including more stimulating games like Animal Crossing or Stardew Valley, which can hardly be called ‘stimulating’). I mean this was better than nothing and kind of relaxing, but it was really bad at that lowest point. I needed a medical deferral for my honors thesis, which was crushing for me because I absolutely love research and was so excited for that project, and have worked so hard on my honours Bachelor of Science. I also was never much for asking for help so asking for such needed changes was uncomfortable and unfamiliar territory for me.

Before I knew it was happening with me if I pushed myself too hard, it even became a challenge to communicate effectively or even read. It felt as though piecing together the words in my brain took tangible effort, if you can imagine that experience, the way a car might sputter before coming to a stop when it’s running out of gas. I am infinitely grateful that I managed to rein those symptoms in with care and caution. In gratitude, I have been reading like a maniac ever since (If you are craving some excellent sci-fi, Adrian Tchaikovsky’s Children of Time books are so good!). When you realize you might lose something like that, so easy to take for granted, it suddenly becomes so much more precious.

Chronic illness forces this massive identity shift, and it is at this point which I will remind everyone listening of the unpopular reality that no matter who you are, you too will face this reality one day. Every single person will experience a change in their health status at some point in their lives. This will require such adaptation, adjustment, and re-evaluation of their identity. In my case, no one explained this to me. It was just something that hit me like a bulldozer that I had to figure out how to live with. It is my hope that, the day chronic illness or a change in health status hits for someone out there reading this, that the bulldozer might not quite hit so hard or at the very least you will see it coming.

I dealt with it by withdrawing. I focused on finishing my university degree with online course options and figuring out my new health needs. I stopped answering phone calls and replied only to the bare minimum of emails and messages for several months when I had stopped working. In most cases this would be considered very bad practice for one’s mental health, but where neurodivergence is a possibility of consideration for me it may have been the smartest thing I could have done for myself. It really allowed me to strip away any illusions or accommodations for others that I might have built and evaluate myself very honestly and thoroughly to learn what my needs really were.

Identity shifts are a bit different for those in the neurodivergent camp and necessary to begin unpacking the adjustments made throughout our lives to present as normal. Neurodivergent people often shift their identity like a chameleon to attempt to fit in based on who they are interacting with. It’s often subconscious rather than intentional too, and is especially the case for those as-yet undiagnosed folks who consider they may exist on that spectrum to some extent (like myself), and otherwise present as what neurotypical people would generally call ‘high-functioning.’ So really, all high functioning means to a neurodivergent person is good at masking (defined as hiding or reducing traits, such as stimming), and unfortunately the consequences of that eventually come home to roost with health problems or unique forms of burnout. It is hard on the nervous and endocrine systems, to pretend for a lifetime that those systems do not have their own unique needs and thereby denying them.

For those in the Ehlers Danlos Syndrome (EDS), or the Myalgic Encephalomyelitis (ME/CFS), or the Postural Orthostatic Tachycardia Syndrome (POTS), or the Mast Cell Activation Syndrome (MCAS) -cluster camp, all these conditions have really high correlations, but it’s also important to acknowledge that neurodivergence is also commonly correlated with all those syndromes. If that statement resonates for you, perhaps consider some additional reading on the concept of unmasking autism or understanding the needs of the ADHD brain to help minimize flares and reduce cognitive stressors which may contribute to symptom severity. Fun fact about POTS: the regions of the brain found to have reduced blood flow are the same ones which potentially facilitate a number of autistic traits and ADHD symptoms (e.g. difficulty with concentration and sensory sensitivities to light and sound). The research study that point is drawn from can be found here: Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with postural orthostatic tachycardia syndrome and cognitive dysfunction | Scientific Reports⁠ (https://www.nature.com/articles/s41598-025-87748-4): “The regions with the most prevalent abnormal CBF were the left and right lateral prefrontal and left and right sensorimotor cortices (41.1%, 33.9%, 32.1%, 26.8% respectively, Table ⁠2⁠), followed by the pons and right inferior parietal cortex (17.9% & 14.3% respectively…).”

For this reason, POTS and neurodivergence creates something of a chicken-and-egg conundrum in that it can make it be difficult to tease apart. Which came first? So notably, the difficult symptoms and chronic pain from some of these conditions would also make it difficult, if not impossible, to mask at all. Chronic illness changes how we need to accept ourselves and relate to others. It changes what we bring to the table in relationships and forces a reassessment of our worth. It challenges the notion of who we are as well as what we might be capable of and how to plan for our future. Sounds easy, right? (Sarcasm totally intended for any autists in the crowd.)

Now I am going to share something that has helped me through that messy process. It is something I firmly believe and has inspired my work in the world throughout my life… Think of people like oysters; stay with me people, put googly eyes on them if it helps! I’m going to ignore some of the science on oysters here, but it creates a nice imagery for the point I am trying to convey. Either way, imagine a hard protective shell with a soft inner body and a pearl protected therein. I believe all people carry a pearl with them throughout life, a gift for the world. The odds any of us existing is so astronomically small, so that’s either the craziest pointless coincidence, or there are no coincidences. The world is a hard place to get by in at times and we have to learn to protect ourselves. As we get older though, we need to open and rest more often. We need to learn to do that side of things to reveal that pearl we carry. It can only shine if we can find the environments, we need to be able to feel safe and open ourselves fully. Only then can we really explore it and learn how to share it with others and the world at large.

So, if we are starving or fighting for our next months rent constantly, or if we are shut down by people around us when we try to express ourselves, or if we are in a war zone, or working all of our waking hours away for pennies… There are certain groups and people who are given much less opportunity to share their gifts with the world, and I see this as the greatest crime ever committed against humanity. Imagine how much better the world might be if the passion and genius of more people was permitted to shine! Now, here’s the thing about disability and changing health status: you still have that pearl, it’s just harder for you now to share it.

We are given a choice in such circumstances, either to collapse under the weight of it or do what we can, no matter how small. We can have faith in the power of small efforts and baby steps, as well as in the promise of change. No matter where that is for you right now, it will change. Embrace whatever you need for a more positive direction, at any speed. The world needs what you have to offer: your passion, your creativity, your lived experience and unique intelligence. The more we help each other, the better we have that environment to be present for more people so that the greatest gifts of humanity can come forward for the benefit of us all.

Your worth is not in those smaller details attached to a perceived identity but how you respond to change and challenge, like the oyster. That is what really refines that pearl and it is there, with that thought that I encourage you to sit with and process this blog.
Trust yourself, you already have everything you need to find your way.