What I Want Personal Trainers to Understand About Working With the Chronically Ill

I have several diagnosed chronic illnesses which can impact my training. The illnesses themselves, the medications I take to manage them, and the surgeries I’ve undergone to ameliorate the damage they’ve done to my body, all impact how my body works, how strong I feel, and how much I can push myself. When I’m working on my own, I’ve gotten pretty good at adapting my training to what I can handle and how it feels. However, that kind of autoregulation has proven trickier when I’ve worked with a personal trainer. The realm of health and fitness is a place of privilege, including a strongly ableist culture that can make it very difficult for someone like me to feel safe and welcome. If you would like your practice to be a more welcoming place for folks of varying strengths and abilities, here are a few things it would help if you understood and could put into practice:

Check in with me regularly in a manner that alleviates me of some of the emotional labor of constantly advocating for myself. Systems designed for autoregulation are great here–ask me my pain or energy on a 1-10 scale before and after a new activity, or give lifting instructions using RPE or RIR. This gives us a neutral reference point to use to communicate my varying abilities and lets us find that training sweet spot of just enough challenge, adjusted to the moment.

Help me with my form but don’t assume “perfect” form is perfect for me and my imperfect body. Everyone has natural asymmetries and imbalances; however, they can be taken to a whole new level when we’re talking about physical disabilities, nerve damage, surgical removal of organs and other such physiological differences. Not all of these differences can be easily seen, either, so I would love to work with someone who can maintain a mindset that accepts a certain level of “good enough.” My understanding is that our bodies adapt to the pressures we place them under, and as long as I’m consistent with my technique and work within my abilities, my risk for injury is relatively low. Constantly focusing on what I’m doing “wrong” highlights my challenges, and you may be asking me to accomplish a physical task I literally cannot do.

The stories we tell ourselves matter, so be careful what narratives you’re telling me. It is perhaps obvious that holding someone back, telling them they can’t do something or shouldn’t do it, can be harmful. But what may be less obvious, and equally harmful, is telling us all we need is to believe in ourselves and try harder in order to achieve. I like pushing my boundaries; I believe it is the only way we progress. However, the line between good boundary-pushing and damaging boundary-pushing can be very fine, and sometimes I only know I’ve pushed too hard after the fact. Also, there are some boundaries that I may simply never be able to cross. There are true physical limitations caused by my health challenges. No amount of positive affirmations or hard work will grow back missing organs or heal tissue damage. That doesn’t mean I don’t want you to help me become the most I can become, but I also need to know you’ll help me focus on the areas in which I can grow while working within physical challenges that I need to live with.

Help me understand the why of my training so that I can adapt to my changing needs while still making progress. When I go off to train on my own for the week with programming you’d like me to follow, I will do my best to follow it. However, what if one day my energy is especially low, or some chronic pain flares up, or a movement just feels wrong in my body that day? Knowing enough about the goals of the programming helps me adapt in the moment to focus on the highest priorities and to let go of the rest. Optimal for me may not be optimal for someone else–what is best for me is to keep progressing through the ups and downs of living within my physical challenges. I would rather make slow progress than to push too hard and become demotivated due to chronic pain or exhaustion from overtraining.

More than anything, for me working with a trainer needs to be a collaboration. I don’t expect anyone who works with me to be able to read my mind or already know what I need before I know I need it. I also know I have a lot to learn, and as I learn new things, we will both develop a better sense of what I can do and where the challenges are. When I work with a trainer, I’m looking for a partner, a guide to help me navigate in the world of strength and to help me problem-solve to keep me progressing. I need someone who can find the balance between neither defining me by my physical limitations while also not ignoring them.

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