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Redefining fitness with a chronic illness 

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Introduction 

I started working out to try and manage my chronic illnesses and mental health, long before I really knew what I was dealing with. Turns out I am hypermobile, but back when I started to experience daily pain and other symptoms, I was told that it was just anxiety, growing pains, and a normal “girl thing.” I was told to try exercise and watch what I eat. 

So I tried exercise. I didn’t know what I didn’t know back then and the long story short of it all is that I struggled. I constantly experienced more pain then I felt was right for the work I did. I would get injured really easily and even a short workout left me exhausted. But I stuck to it, because everyone knows that exercise is good for you. 

I did everything they told me to do. I spent hours on a treadmill going nowhere, but could never pick up speed without it hurting my knees. I tried to lift weights, but everytime I worked my shoulders I got a really bad headache. I did squat after squat and my hips never stopped aching. 

Now at 37 years old, I have completely redefined what fitness means to me. 

Seeking Answers

I went to every doctor I could find (which is actually very few) and tried to find answers. No one really knew what was happening to me because all the different aches, and symptoms were seemingly not connected. It wasn’t until I finally broke down in front of a physiotherapist and told him how I felt like I was falling apart! I listed all the different things that had felt wrong over the last several years and you could see a light bulb flash above his head. 

He asked me to move and bend in a couple different ways and declared without ceremony that I am hypermobile! Then proud of the great job that he did… after treating nothing mind you… he went off to his next client, and I was left reeling. 

I went home and I started googling, learning everything I could, which was not very much. Hypermobility is believed to be very rare, and for a moment I felt kind of special. Then as the millennial I am, I turned to social media, and found that it is not nearly as rare as doctors think. It’s just hard to diagnose. 

So I did what every sensible spoonie would do when lacking resources. I decided to go back to school and find the answers for myself! 

Ok, no I don’t really suggest going back to school while your symptoms are progressively getting worse. I also don’t suggest you try to plan a wedding at the same time, but that’s a lesson for another time. 

I went back to school and took a course for therapist assistants. This taught me the basics of physio, occupational and recreational therapy. I learned a lot about anatomy and the mechanisms of pain. I started to learn more about my body while also learning how to help others. 

Making it My Whole Life

I knew before I started that I was most interested in helping people rebuild strength despite chronic pain and injury. I probably should have focused on athletes, it would have paid more. But no, my bleeding heart wanted to help others like me. Those who were beyond the support of a physical therapist. 

Something that most people don’t know about chronic illness and disabilities is that you don’t get support all through life. If you are born with a disability, you can sometimes get help learning to manage when you are young, and if you are suddenly injured there are people assigned to help you get better. But when your condition has no real chance at “being cured” there are not a lot of avenues to turn to. 

I found so little out there that would teach a person with chronic pain how to move and stay active. There are a few resources for elderly people, but when you are 20 something, you don’t need to be reminded that your body is acting like it’s 80. 

So I set my sights on filling the gap that no one really realized was there, which means I had to make a lot of it up as I went. Traditional fitness resources were a starting point, but I had to look outside the box. 

Learning to Listen to the Body. 

When I started working with other spoonies like me I quickly learned that we are not built the same. While a healthy person might walk into a fitness class, and find it challenging, a chronically ill person will walk out of the same class feeling wrecked. There are a lot of things that need to be considered. 

Different illnesses and symptoms will affect everyone differently, and not every type of workout is going to be healthy for everyone. We need to consider things like the stability of our joints, heart rate, breathing issues, balance and more. It’s a lot and it requires paying more attention to our bodies then we might want to. 

Most of us have an idea in our mind of what we should be able to do. This data is based on what others said we should do, comparisons of others our age, and what we were able to do before we got sick. None of these have any base in current reality. When we ignore the messages our body is sending because we think that our ego knows better, nobody wins. 

When you learn to listen to your body you start asking questions like: 

  • What kind of movement can I do today? 
  • What kinds of movements do I actually enjoy? 
  • What kinds of movements will help me feel better right now? 
  • What other demands do I have on my energy today? 
  • Do I need to rest or take it easy today? 
  • What can I do to make this movement more accessible to me? 

I bet you’ve never heard any of that shouted during a fitness class! That’s because the industry is not well known for personalizing fitness or focusing on fun and function. Their loss if you ask me. 

Intuitive Movement for Chronic Pain 

After a while I started to call this intuitive movement, inspired by intuitive eating. They share a similar goal of helping you heal your relationship with health and your body, and embracing a new way of thinking that focuses on self compassion and wellness over society’s image of health. 

Intuitive movement focuses on breaking the pain cycle, allowing you to explore movement from a different point of view, and learning how to use it as a tool of wellness, rather than a punishment for how you look. I encourage setting flexible goals and having options on hand for different levels of energy. 

One of the biggest struggles my clients had was with the phases of chronic pain. One day they would feel good, and the next they would crash, which would leave them with an inconsistent routine at best. They felt like failures because they couldn’t do the same thing everyday. This is a common mindset when it comes to fitness, but it’s not even that realistic for healthy people. We all have busy and slow seasons. We have bad days and weeks and sometimes months. We can get distracted by life and work. 

Health is not about always being perfect. It is about always staying focused on the big picture and coming back to your goals despite the bumps you might encounter. 

Still not perfect

I would like to say that now I work out often and perfectly and everything is great, but I am not here to lie. Exercise is hard. Having a chronic illness is hard. Trying to stay active with a chronic illness is very hard. 

I can however now say that I am confident that it will all be ok. Some days I will workout and give it my all and some days I will rest. I might end up having to rest more than I want to but that doesn’t make me a failure or less worthy. I might beat myself up for it some days, because daily pain is exhausting, but I know that I am not a bad person. I feel pride when I modify my movements to fit my needs and when I cut a workout early because my body was telling me to. I take strength from knowing that my best is all I owe myself, and no one else. 

Redefining what health and fitness looks like for you is the first step to embracing an approach to fitness that will accommodate and fit your body. If you were not built to fit in, be proud to stand out. 

Written by: Randi Pullar

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