When I developed Chronic Fatigue Syndrome (CFS) over seven years ago, I assumed it would be a brief detour in my life, and I’d soon be back to saving the world with my own bare hands. Maybe that was an unrealistic goal even for a healthy person, but at least I was enthusiastic.
I understand firsthand that, when you have a chronic illness, it can be hard to get out of survival mode and back into other things that you care about. It seems cruel and ironic that many of the people I know with debilitating chronic conditions also happen to be deeply passionate about making the world a better place. Things begin to feel even more tragic when we realize that working on causes we care about is often a big part of what motivates us to keep going and contributes to our sense of meaning and belonging. For me, having Chronic Fatigue Syndrome (CFS) and being committed to action on climate change seemed hopelessly incompatible.
Over time, though, I proved to myself that this wasn’t true. And I’m not alone—there are loads of other people with chronic illness and other disabilities out there who are fierce environmental advocates. Now that I’ve found some balance in my life* and I’m ready to take on more, I still use the same approaches I used back when it was hard to do even basic everyday things.
If this story sounds familiar to you—if you have health barriers that keep you from contributing to causes you care about—then I’d like to share with you my approach to “doing a little better” in the world. Maybe climate change is not your biggest priority. That’s cool, there are 100,000 other issues to be passionate about, and a lot of them intersect with one another.
Before I launch into what I’ve been doing and how I do it, I’ll start with the most important thing to remember: sometimes, you will do nothing.
And that’s okay.
1. Do nothing when that’s all you can do.
“You are not defined by what you can make, do, or produce.”
The quote above is from Whitney Dafoe, a photographer and filmmaker who became an advocate for people with CFS after he developed an extremely severe case of it. His father is also a medical researcher at the forefront of the search for CFS treatments. I want to highlight his efforts and his existence, because even when he couldn’t (or can’t) do much of anything but be alive, his being alive has helped keep me going. When I was very ill, I believed that, if his life meant something to other people, then maybe mine would, too. Even on my “survival” days.
On a day when Whitney was able to communicate to the outside world a bit more, he shared words that I always hold with me:
“The Universe is always changing. Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.”Whitney Dafoe
If I could emboss this on the inside of my brain, I would.
I’m sharing this first because not everyone with chronic illness has the energy or ability to work on things they care about right now. I had moderate CFS, so my experience was different from those who are more severely affected. But, there were days when I couldn’t do much but exist, and I often felt terrible and guilty about it.
To the people who are fighting to just make it to another day, and hope to someday do more than that, I will tell you what I wish someone had told me: you are worthy of being in this world. You deserve care and appreciation. And, on the days when you feel like you have a tiny bit of yourself to give to the world, please know that your efforts are meaningful and appreciated.
During my difficult days, weeks, and months, I sometimes had the darkly humorous thought that my illness at least prevented me from using up fossil fuels through travel. Nor was I was taking hot showers or baths every day, or shopping for new work clothes or going out for lunches and dinners.
Gradually, I started to get tiny bits of life juice back, and I started thinking about what I could do.
2. Start small? No—start tiny.
It can be overwhelming to consider the disparity between how much you want to do and how much you are able to do. As author and therapist KC Davis of StruggleCare writes, “You are not responsible for saving the world if you are struggling to save yourself.” Of course, none of us can be solely responsible for saving the world from environmental degradation. It’s a continual, collective effort, and some of us have more energy, knowledge, power, and money to throw at it.
However, when I read KC’s book How to Keep House While Drowning, I realized that, after taking care of the absolute basics, there was some time and energy left to do something small to make the world a better place. Or at least give myself the fulfillment of trying.
At first, I was a little overzealous. I wanted so badly to spend 8 hours a day, 5+ days a week working for climate justice or something closely related to it. A little bit was never enough. Going slowly was never enough. Pausing, resting, and waiting were agony.
Because of this restless urge to do things perfectly, I fell into the trap of trying to make ALL of the most sustainable lifestyle changes. It was too much to take on all at once, and I always gave up quickly. Eventually, I learned about “eco-ableism” and how it applied to my own situation, and those with more severe disabilities than my own. If you are a person with a disability and you feel alienated from environmental movements because of the things you need to buy, do, or consume in order to take care of yourself, then you are likely already familiar with it, too. This also applies to exclusion from many common forms of climate activism, like protests and lobbying.
Frustrated but undaunted, I tried looking for part-time work that would fulfill my environmentalist desires. Even that was too much to start with, though. I came to accept that, after too many cycles of pushing and crashing—with CFS and with my own motivation—I’d have to take the advice of all those dang behavioral economists and psychologists: I’d have to start small.
I signed up with a couple of reputable environmental organizations who send out action alerts via text and email. It was easy—all I had to do was plug in my basic information, and I would get pre-written letters that I could personalize and send off to my elected officials. I also selected a nonprofit through Amazon Smile, and they receive a small amount of proceeds from my eligible purchases (also, no judgment here: Amazon is extremely convenient and can be a lifeline for people with illnesses and disabilities). I Googled “best climate change newsletters” and signed up for a couple that sounded more encouraging than terrifying. It only took a few minutes.
There are so many climate change nonprofits out there, and so many actions you can take that it can be hard to choose what to start with. I haven’t bothered writing out a list here—the internet is full them already. The most important thing is that you begin. It doesn’t have to be perfect, and you can tweak your approach later on.
If you need a little encouragement, listen to the words of climate activist Vanessa Nakate:
“Your actions matter. No action or voice is too small to make a difference.”
3. Do what you love.
Everyone—whether they have a chronic illness or not—needs time to have fun and do things they enjoy. It also happens to be incredibly beneficial for our health. So, if you ever feel guilty about doing fun things instead of chores or work, just tell that guilt to f*** off, because you’re doing exactly what you’re supposed to be doing. Luckily, helping fight climate change—or your chosen cause—doesn’t have to be a drag or a bore.
For me, connecting with organizations that could help me become an advocate was the first step. Once I’d gotten into the flow of sending those pre-written emails and letters once or twice a week, I wanted to make things a little more personal and to enjoy myself at the same time.
Making art seemed like the perfect way to achieve this. I’m not a professional artist, but I deeply enjoy the process of creating things and experimenting with colors and materials. So, I began making small pieces of artwork connected to the theme of climate change. I posted them on Instagram and Facebook with quotes that might inspire people to take action, too. It was surprisingly effective in terms of communication—people saw some original art by me (regardless of its quality) and were pulled in by it, then BAM! I had sucked them into reading about climate action. An effective and worthwhile bamboozle.
Eventually, I started sending pieces of my art along with letters to elected officials. Then, I started using the letters I received in response as part of future artwork. Then, I found other artists on Instagram and Facebook who were focused on climate change and environmental justice.
It’s funny how small things pick up momentum, especially when you’re doing what you love.
So, if you want to make your activism more fun and less burden, think about the following things: what you love doing, what your skills are, what you desperately want to do when you have free time, and what you could do for hours if you had the energy to do so. Again, it’s okay to start as small as you need to.
Maybe you love taking photos, even if they are of the inside of your bedroom. Writing—even a sentence a day. Making crafts. Playing video games (seriously!). Making videos. Talking to people. Posting on social media. And, if you have a little more energy: cooking, gardening, or mending/fixing old clothes or household goods. If you’re able to simply sit up and look out your window, and that window looks out onto any little scrap of nature, you can become a citizen scientist with the National Phenology Network and help track the effects of climate change on seasons.
Whatever you choose, keep it tiny at first. Be consistent when possible. Make it fun. Find some folks who are doing the same thing. And when you need to rest, rest. Even if your actions are small, you’re still doing more than someone who is doing nothing. And the small stuff adds up.
*My health has been improving for a couple of years now. CFS recovery, remission, or improvement are not well researched, and it seems that the people who do improve use lots of different methods and treatments, just like those who don’t. I strongly believe that the things I’m doing differently now will help prevent major relapse, but I can’t know for sure. I don’t think recovery is necessary to start doing small things for the causes you care about—you just have to find what works within your energy envelope. Also, when I say “tired all the time” in the title, I know that doesn’t even come close to describing what CFS is like, but I did think it might help include those who don’t have CFS, but have another condition that has fatigue as one of its many symptoms.