Working out is super hard under the best conditions, but especially hard when you are a chronic pain patient. Over the last year and a half, I went from being bed-ridden to being functional on most days again. I work out probably 5-6 times a week (unless I’m injured) and I’m continuing to reach a healthy weight. If your goal is to lose weight, I can’t help you. The reason I can’t help you is because MY goal was to create a sustainable lifestyle so I could be healthier again. Research will tell you that exercise doesn’t matter for weight loss, and maybe that’s true but I know for a fact that it matters if you want to be healthier. So please don’t expect that I can tell you what to do about the number on the scale. That number might be perfectly fine and healthy for you, it might be too high, it might be too low. I don’t know. But what I do know is that I wanted to be able to dance again.
Now, up front, there are some basic barriers to this that the social justice community needs to take up as part of our list of causes. A lot of my success has depended on access. I’m able to exercise BECAUSE my pain is better managed and my pain is better managed because I can exercise. My pain is better managed because I now have access to medical marijuana and acupuncture and supplements. For people living with chronic pain in poverty, this challenge is a lot harder. Medi-Cal covers acupuncture but most doctors won’t take it, medical marijuana isn’t covered by insurance and that access depends on where you live. Supplements aren’t covered, though Vicodin and the like are. The most likely outcome as a chronic pain patient with Medi-cal is that they will shove prescriptions at you and hope for the best, because that’s what the government covers. Yet another reason we need universal health care, especially as research is currently implicating the exact drugs chronic pain patients are on as part of the health crisis among poor whites. So before we start lecturing anyone about how I did it so they can too, you can put some hours into fighting income inequality and poverty.
With that said, there are some pretty practical things that can help a lot of people that took me a while to figure out on my own, so I’m imparting that knowledge.
- Go slow
The goal isn’t to do CrossFit tomorrow (OR EVER! WHY GOD WHY!), the goal is to be more functional and in less pain. The best way to start is to start out small. I started with short walks before they became long walks which then became yoga, which then became dance. 5 minutes became 15, 20 became an hour. OVER SEVERAL MONTHS. Especially with Ehlers Danlos Syndrome, the goal is to avoid injury because injury sets us back and also makes us want to avoid exercise in the future. Injury in Ehlers Danlos is also permanent, so it’s NEVER worth whatever the push was for. Stop when it stops feeling good.
- Have fun
A lot of chronic pain patients develop justifiable fears of movement because they exacerbate their conditions. We’ve developed negative associations with exercise because of past injury or poor pain management. The goal is to find things that you can develop positive associations with so that your brain and body start to associate exercise with a positive experience. For me, this means that I also had to think around social anxiety too. So planning around this, I knew I didn’t want to do competitive activities that involve a lot of social interaction. So I started doing yoga based on youtube and books, and walking. I love to dance, so when I was able, I started incorporating that too. After some time, I developed such positive associations that I kind of hate when I don’t get to work out. Coming from someone who grew up in a family that mocked me for yoga, this is a huge improvement.
- Please for the love of God don’t push yourself to work out when you are ill
Pain is your body’s way of saying something is wrong, other people will encourage you to push past this. These people do not live with chronic pain and aren’t fragile and likely to be injured. These people should not be giving sick people advice. The goal is to be able to do more over the long term. It’s not a race and you don’t win by being injured.
- Listen to your body
One of the degrees you get as a chronic pain patient trying to exist is in ignoring your body. “The pain is always there so I just ignore it.” “I can’t work if I don’t ignore the pain.” Even perfectly healthy people do this because we live under an industrial system that is frankly quite brutal. But your body is pretty smart and it does know what it needs if you learn to hear from it. Doctors gaslight us into not listening to our own bodies or health needs but this is a HUGE mistake if you want things to get better. You have to plan exercise around what works for you. On days when my shoulder hurts, I need to walk instead of doing yoga or I need to do a different form of yoga. I spent a lot of time also meditating and working on my anxiety so that I could listen to my body again, and because I spent that time I was able to create a system that worked without injuring myself.
- Routine is your friend
This one is really hard because sick people never get sick on a routine schedule and because some of us (me!) didn’t grow up in a house with a whole lot of routines. This isn’t about always doing the workout or doing the workout at the same time every day or to the same level of difficulty. It’s about knowing that it’s better to do a little bit more often than to do big long workouts that tire you out. It’s about self-care routines like baths (hot water therapy is my best friend in the whole world, besides Epsom salt, but they are in a committed relationship with each other). You have to make exercise a sustainable life-long habit for it to work, so don’t try to show up to 90 minute fitness classes with perfectly healthy people if that doesn’t work for you. I don’t dance in a studio. I dance like I’m from North Highlands in my bathroom. But I do these things most of the time as part of my routine.
- Your mental health matters too!
You know what makes it super hard to work out? Anxiety. SO HARD. So I had to actively start treating my anxiety. Depression makes it hard too. So does a whole host of conditions that can be brought on just from being in pain all the time. Again, this is something that we need to improve access to, so before you go around telling people to “get over it” I’m going to ask that you put some hours into expanding mental health treatment access. Your environment also matters a lot! We think we can just “power” through whatever, but we can’t. You have to reduce stress in your life to deal with the health issues and environmental factors make all the difference, so again, let’s work on poverty. But assuming you have some resources, I would encourage you to take up meditation and get your mental health issues treated like the real condition they are, because they will inhibit your ability to exercise and make routines. I don’t have a medical degree, so I don’t know that they would work for everyone, but there are free meditation apps like Brainwaves that I’m having a lot of success with for anxiety. Some mental health problems are also nutritional, I’m taking a B12 supplement (I have deficiencies both from my body being weird and my childhood) that has helped both my anxiety and energy levels. Some feelings come from having just experienced a lot of terrible stuff, in which case, there are a lot of promising treatments for most forms of PTSD. I’m not saying that things will be perfect. I still have lots of bad nightmares and flashbacks and all sorts of fun stuff but the goal here isn’t to be perfect, it’s to be happier and healthier.
- Get a new doctor if yours isn’t helping
This is harder because there are real access issues here, but if your doctor isn’t giving you the resources to improve, or doesn’t take you seriously, get a new doctor. It’s not conducive to you healing to have a doctor that gaslights you and a doctor that believes in you and works with you to achieve YOUR goals is going to make a huge difference down the line. Seriously, this is what they are paid to do, to heal you. Fire them if they aren’t working on that. And not to be too biased, but until male doctors step their game up, I’m going to say that I’ve had A LOT more success with female doctors at the helm. They’ve been more likely to treat me with compassion and respect and like an equal partner in the process. YOU DESERVE THAT, SO DEMAND THAT. If your doctor makes you uncomfortable, report them too. Just because they went to school for a long time doesn’t give them all mighty god powers. They are human beings, and while I suggest that you find a doctor that you feel you can trust to not micro-manage (I do whatever my doctor tells me now because she has already been successful, so I don’t question her except for clarification), I also will very loudly encourage women to self-advocate in the medical office. Every experience with your doctor shouldn’t be stressful hell. Stressful hells are not conducive to healing.
Bottom line here is that exercise is part of self-love and we are all learning that concept again after a lifetime of being trained to treat ourselves cruelly for the sake of production. So I’ll end with this reminder: you are a human being. This is beautiful. This is more than enough.