What I have learned (and unlearned) as an invisible illness exercise physiologist
I’m the first to admit that the work that we do in the chronic, invisible illness space can bring up some difficult feelings:
Overwhelm (oh my gosh, so many symptoms, so many previous treatments trialled, nothing worked, oh my gosh)
Concern (what if something serious has been missed? What if I inadvertently make this person feel worse?)
Inadequacy (this person knows so much about their condition, who am I to help? Do I have anything to offer? We didn’t learn this at uni!)
My postgraduate education had one lecture on chronic fatigue and pain, featuring a bit about pacing, and was grounded in the notion that people with these conditions won’t come to see us anyway because they’d go to someone with more experience, or an outpatient program in the hospital setting. How wrong and naive this was!
I remember the first client I saw with Chronic Fatigue Syndrome/overtraining syndrome/POTS - an adolescent swimmer referred to me by a sports physician for input on his exercise program. I was two years out of uni as a sole trader with no clinical mentor in sight, and I had absolutely no idea what to expect.
A frantic Google search prior to the appointment pointed me towards graded exercise therapy, and I certainly wasn’t as sensitive to the nuances/potential harm around this as I am now (another blog post on this soon!). I listened to his story and symptoms, and using the theory of the musculoskeletal pump for hopefully increasing venous return, I prescribed him some seated calf raises to do at his desk and some sit-to-stands every now and again. We didn’t chat about hydration, nutrition, pacing or resting, which I definitely would if I had my time again.
The swimmer and his mum came back in 4 weeks and said that he had improved significantly - less dizziness, now able to swim in the pool. I still to this day cannot confidently say why he might have improved, but it piqued my interest into the pathophysiology and management of these conditions.
A small sample of things I’ve had to unlearn, and what I now know to be true:
That chronic fatigue (the symptom) was due to deconditioning, and chronic fatigue syndrome (the condition) was just a long version of this, with reconditioning required.
I don’t know if anyone explicitly said this, or if it was implied in the two hour lecture (which is SO not enough, by the way), or if I just extrapolated it from what we learned about aerobic and anaerobic exercise physiology. I now know that chronic fatigue (the symptom) is vastly different to ME/CFS (the condition), and that the evidence for exercise is far too mixed to apply a one-size-fits-all-approach (if exercise is even indicated at all for the individual).That pacing meant looking at how many steps someone was doing per day and then trying to get them to do the same amount of steps each day, and then increase this each week.
I mean, this isn’t suuuuper wrongo but it ain’t great either. Load is so much more than physical, and I believe that humans are designed to have a bit more variance in life rather than reaching the same amount of steps per day. I’m also not a fan of a no-questions-asked weekly increase in anything without evaluating other factors first.
That pain is often due to muscle tightness, or weakness, or both; and this is how strength training and stretching ‘works’.
I’ve had to do a heap of unlearning around this, and The Knowledge Exchange courses have been supremely helpful in doing so. Movement certainly CAN help for pain, but when framed under the false guise of tightness/weakness (or the lethal combination of the two) (sarcasm), the seed of an unhelpful belief is planted and nourished by stretching the bejeezus out of someone’s psoas muscle.
Skills which I do draw upon regularly:
Active listening - for hopefully very obvious reasons
Empathy - see above
Sourcing, interpreting and critically analysing research - I find that particularly the introduction section can help me get to the root of a presenting condition, and lead me to other useful papers via the references section (down the rabbit hole we go!). For the right client, sharing excerpts from the research in a follow up email has also strengthened our therapeutic alliance and helped us both move in a meaningful direction together.
Problem solving/motivational interviewing - although the conditions I once applied these to have changed, the behaviours we’re trying to work on can have similar barriers (low motivation, low understanding, no time, social factors, no access to equipment) and I do love leaning on a good old decisional balance matrix to help someone find a way through.
Anatomy and physiology, especially breaking these topics down and simplifying them - I still believe people that love to know about their body and why it does what it does, especially through the lens of their chronic illness. A lot of the research is theoretical and I do frame it that way, but trying to understand ‘why’ something is occurring can reduce the secondary suffering caused by fear and uncertainty.
Metacognition (‘thinking about thinking’) - learning more about biases, fallacies and reflecting on my own thought patterns has cracked my world right open, in fact it still does. ‘Thinking, Fast and Slow’ by Daniel Kahneman is a great entry point into this topic!
Other things that have helped:
The wonderful mentoring of our very own Florence Kelly, around 5 years ago, changed the way I practice. She affirmed what I was already doing well and gently suggested what could be improved. I still pinch myself that we get to be business partners.
Subscribing to Google Scholar Alerts for the key conditions I’m interested in - I’m a shameless research nerd and have a reading list which I’m great at adding to, and slowly chipping away at.
Being a passive observer on patient Facebook forums, Reddit and the like. I find that this helps me learn the language used, get a sense of any controversies/grievances of the population, listen out for what is actually helping people, and keep abreast of the most recent research. I do this in a paced way as it can bring up immense feelings of compassion and helplessness if not kept in check.
Practicing what I preach - trying as best as I can do live a paced life, incorporating mindfulness and relaxation into my routine, having interests outside of this field, noticing my own reactivity and emotional responses, journalling, debriefing.
Never forgetting the privilege I have of being an able-bodied, non-energy impaired, thin-bodied, neurotypical cis-het White woman who gets paid to do this job, that I love, and I want to keep doing forever.
I hope that something here has resonated with you! If you are reading this as a practitioner and feeling the same feelings that I do, you’re not alone, and the fact that you’ve identified them makes you wonderfully placed to work in this world. We need self-aware, compassionate humans out here. You are always welcome in our course, regardless of your level of experience.
And if you’re reading this as someone who receives support for your invisible illness, which is also very probable and possible, I hope this peek behind my own curtain was illuminating too.
As Dr Brene Brown says: “I’m here to get it right, not to be right.”
