Exercise is generally prescribed for people that are living with chronic illness and while it seems to be universally accepted as a good idea, there doesn’t seem to be as much literature or advice on what that looks like or how to work with someone who is chronically ill. I want to raise awareness and hopefully give some usable insight for those who will find themselves working out alongside or coaching the chronically ill.

Most of what I share comes from my experience as an athlete and as a person who has been living with MS for a little over six years. Each of us with this disease walks though it in a unique way, just as each person with a chronic illness walks through his or her journey in a unique way. In our uniqueness there are commonalities, and it is from those commonalities that I would like to both humbly and respectfully share some ideas.

Those with chronic illness are working hard just by showing up

For the first two years of dealing with my illness, I gave up any form of athletic training. I just didn’t want to try to train while dealing with the pain and fatigue that comes with my disease. As a result I got out of shape, gained weight and felt shame every time I walked or drove by a gym of any sort. I finally started training after spending time with a man dying of Parkinson’s disease. He was bed ridden and in terrible pain, suffering like no human being should. His hell was deeper and wider than mine and so what I witnesses one day changed my life. I’ll never forget the day I came to into his bedroom walking in on him “exercising.” From his bedridden state, he was purposefully doing “finger exercise” since his fingers still moved. His training was the most hardcore of any I have personally witnessed. All he said to me (he knew of my MS) was “Jon, people like us must train and move whatever we can move for as long as we move it. The people in our lives depend on us.” His comments changed me and got me to push in spite of the pain and fatigue.

Going to the gym proved to be more difficult than I expected because the people in the gym looked at me with disdain. I was working so hard and the effort was visible on my face, yet the amount of weight didn’t seem to match the effort I was giving. The same was true of my cardio training. The level of effort and tiredness didn’t seem to match my physical exertion. Shame was already my companion when it came to athleticism and I didn’t need anyone adding more to the mix while trying to do something that was so critical to my life and well being.

People with chronic illness need a gym and coaches who are supportive and encouraging

We moved to a small community with one gym a little while after my training began. I trained during my lunch hour and the same four or five guys were in the gym at the same time. We got to know each other and they learned about my disease and what I was trying to accomplish by being there. They stepped up and provided a tremendous amount of encouragement and support. Their friendship and camaraderie was an indispensable part of every training session and each PB I hit. Without them I wouldn’t be where I am today. I think this is where a real opportunity exists for athletes and coaches to help create an environment where the chronically ill can be supported in our battle.

Living with chronic illness is by its very nature discouraging, and having a coach and other athletes who will show compassion and encouragement to the chronically ill athlete are helping in ways that they can’t fully comprehend. We need to be stronger, not to win medals or races but to be employed, to be spouses and parents. We need to be stronger and fitter because it makes us more durable, less depressed and like Rippetoe says, “harder to kill”.

People with chronic illness don’t need advice about their disease

This may sound too obvious to write, but I can’t tell you how many people who have no clue about what it is like to live life with my disease give me advice on what doctor to see or what treatment to use. They forget that I am the expert on my own body and that I hate the disease I am locked into an epic battle with. What I need from them isn’t advice but encouragement and support. What most of us hear when we are given advice from someone who isn’t working through a chronic illness is “it is your fault that you are sick.” I know that isn’t what most people mean, but it is often what people with a disease hear. If they ask for your opinion on nutrition, supplements etc. then feel free to share. If they don’t ask, don’t offer. There is nothing that will end your relationship with a person who is working through chronic illness faster than telling them what to do be healthy.

The illness will impact their performance so set attainable goals

Again, I know that may sound obvious, but most of the literature I’ve read on lifting and strength standards doesn’t take into account a person who has limitations due to illness. Personally, my calves don’t relax properly and my right quad is tight all the time. It is like having a permanent injury that I have to work around. Just like we would adjust our expectations of an injured lifter, we need to adjust our expectations of a person with chronic illness. I am not saying to baby them or be patronizing, but to simply take into account what your friend or client is working though and set goals they can reach with hard work over time.

Barbells and kettlebells are good for people with chronic illness

When I first was dealing with being sick I was told not to train too hard, and never exceed 70 percent of my maximum effort. The implication was that I would get on a cardio machine and just “move around.” I have since thrown that doctor’s advice out the window (found a new doctor too) and started lifting with a barbell and kettlebells. While I don’t have scientific evidence of why a barbell is good, I just know it to be true. Being stronger has made me feel better about myself and given me something positive that is happening with my body in light of all the negative that is happening. Over the years I can point to progression of the disease and the impact it has had on my body, which is discouraging to say the least. I can also get my notebook out and see that my deadlift is higher than last year and it felt awesome to hit a front squat PB last week. Those of us with chronic illness suffer a lot of loss and we need some wins. Slow and steady barbell work is one way we can get some wins and gain the strength we desperately need to battle our illness.

Many of you who read The Performance Menu are leaders in the fitness industry. It is my desire to see the leaders of the industry come alongside those who are working through chronic illness and add deep and lasting value to their life and to the lives of the people they live with. It is a deeply rewarding experience to be on the team that helps a person with chronic illness live a fuller life.