Disability, Chronic Illness, & Culture

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October 11, 2024

Chronic illness, climate change, climate grief

NOTE: I wrote this in the summer of 2023. I was about to post it, but then my grandmother died, so my focus was on a different kind of grief. I was reminded of these feelings again this past summer, as I watched more signs of climate change while simultaneously spending a lot of time indoors due to my POTS symptoms, but I hadn't gotten around to publishing this like I had intended. This autumn, my heat intolerance flares are gone as the weather has changed, but naturally due to the hurricanes I have still been experiencing a lot of climate grief as I think about everyone in the south. I know none of us are safe from these changes, no matter where we live.

When I was growing up as a kid with Fibromyalgia, my parents, who were desperate to find ways to decrease my pain, brought up the idea of moving to a warmer climate. They explained that some people see improvement in their symptoms when they move from colder climates (such as Northern New England, where I lived) to warmer ones. I loved this idea because I wanted to feel better, but I also did not grow too attached to it. Ultimately, we didn't end up moving. This was definitely for the best, as I would later find that heat does impact my symptoms - but very negatively rather than positively.

I remember trips down to Florida and Georgia in the summer. I felt suffocated by the heat for most of my trips. I'd do whatever we planned for the trip, feel almost as if I was going to pass out, then stay indoors with fans surrounding me for the remainder of the trip. Once, when I was little and we were at a zoo, I reacted so strongly to the heat that the adults around me grew very concerned. In retrospect, I was likely experiencing early symptoms of my now diagnosed dysautonomia condition, POTS. I experience similar symptoms to this day, though I've figured out how to manage it a little better since I know my triggers and what to look out for. And I know heat is one of my biggest triggers.

On top of the dysautonomia, the summer brings another enemy: worsened joint pain as a result of the humidity. Almost every day in the summer when my pain is much worse, I will check the humidity and it's always high. On days I suddenly feel better, or at least have less pain, the humidity is much lower. The pain caused by humidity is debilitating. It is difficult to do anything during these flares. I take ibuprofen, rest my joints, do gentle stretches, use ice and heat. Nothing helps the same way the eventual change in humidity levels does.

I'm lucky I don't live anywhere that the humidity or heat is an issue for more than one season. But that one season is unbearable enough.

This past summer felt like the longest summer I've ever experienced. I am used to having many summer days where I have to stay inside with the fans on full blast because of my chronic illness symptoms, the heat, and humidity. This summer, it seemed like when it wasn't too humid for me to go outside, it was raining, or the air quality was too poor due to the wildfires in Canada. The days that I felt like the weather was decent enough that I could go for a walk were much more rare than last year. And don't get me started on the pain from the flares that the humidity triggered. The pain felt worse and more frequent this past summer too.

The pain and other physical symptoms aren't helped by the emotions I feel. The nostalgia for a time when the summer weather wasn't quite so severe, the helplessness in the face of one of the biggest issues of my lifetime that my country's leaders are doing so little to stop. Instead of holding the right people accountable, we are told to make little changes in our lives - some are important changes, to be sure, especially when they involve divesting from fast fashion or boycotting corporations that cause significant harm to the environment, but these changes alone cannot fix the problem because what we really need are much bigger, society-wide changes. Uncertainty about the future has always been a struggle for me, and nothing worsens that uncertainty like climate change. The predictions are getting more grim, and very little ever changes. A lot of people are becoming more aware of terms like "climate anxiety," "climate grief," and even "climate rage" and realizing these terms resonate with how they're feeling. For me, the fear and anxiety about the future impacts of climate change combined with the pain I get when the weather is too hot or humid and the sadness over not being able to go on walks as often makes it all particularly crushing.

I'm left worrying not just about the future of our planet and the many ways climate change will impact us all, including an increase in natural disasters, but also the future of my chronic pain and other symptoms as they will likely continue to be impacted by weather and climate change as well. Unless something drastic changes, will summer just keep getting worse for myself and others who struggle the same way I do? How many more chronic illnesses will be impacted by the weather? How many more people will develop health issues related to extreme weather and the impact of climate change? Will the increase in impacts to our health cause people to take more action? If the coronavirus is any indication of how we would respond, I am not that optimistic. Unfortunately, people who are made the most "vulnerable" under capitalism (people of color, poor people, disabled people, elderly people and children) will likely continue to be seen as acceptable losses while the more privileged just feel grateful it isn't them suffering - yet, at least.

I've seen more people in recent years talk about how climate change is a disability justice issue. The ways disabled people are excluded from environmental activism and the ways disabled people are left behind in natural disasters or left out of emergency preparedness plans are two important issues I've seen mentioned. Because people with chronic illnesses are also disabled, the ways climate change and extreme weather can impact us should absolutely be included in these discussions as well. One writer, Sonya Huber, wrote about climate change's impact on her rheumatoid arthritis in her essay "In the Grip of the Sky" in her book "Pain Woman Takes Your Keys." Towards the end of the essay, she writes "If everybody seated around the table at our climate negotiations had to push against a pain-shadow to stand or reach for a glass of water, to raise a hand to cast a vote, might each voice be raised in strong support for change? If every human felt the sky inside, we might wince against each turn of a key in an ignition. The islands being swallowed by water might seem not so far away." Having your health issues worsened by climate change and witnessing natural disasters firsthand definitely make climate change feel closer to home. Sooner or later, everyone will learn this the hard way, none of us will be “fortunate enough” to ignore it. We have to act before that moment comes.

Recommended reading:

Climate change is worsening symptoms of Long Covid and POTS. Here’s how people are navigating it by Fiona Lowenstein

https://thesicktimes.org/2024/08/12/climate-change-is-worsening-symptoms-of-long-covid-and-pots-heres-how-people-are-navigating-it/

I recommend following Mutual Aid Disaster Relief. They posted the following organizations you can donate to for Hurricane Milton survivors:

Mutual Aid Disaster Relief

bit.ly/donatemadr

Paypal: MutualAidDisasterRelief@gmail.com

Venmo: @MutualAidDisasterRelief

Streets of Paradise

https://streetsofparadise.org/sponsorship/

Love Has No Borders

PayPal: multitudeofcheerfulfires@gmail.com

Tampa Bay Mutual Aid

PayPal: loveisrevolutionary@gmail.com

Project No Labels

PayPal: @projectnolabels

St. Pete Food not Bombs

Venmo: @FNBstpete

Tampa Food not Bombs

Venmo: @TFNBFondos

The Well

Venmo: @wellbuiltcity

Kaon City Medics

Venmo: @TeamKombatikon

Tampa Period Pantry

Venmo: @wallbree

Andrew Joseph Foundation

https://andrewjosephfoundation.com/donate

Central Florida Mutual Aid

https://givebutter.com/CFLMA

Lakeland Mutual Aid

CashApp: $LkldMA

PPA Pinellas

CashApp: $ppapinellas

St. Pete Tenant's Union

CashApp: $StPetersburgTU

Here are some disability-specific organizations providing disaster relief and aid for disabled survivors of Hurricane Helene and Hurricane Milton:

Disaster Strategies

https://disasterstrategies.org

New Disabled South

https://www.newdisabledsouth.org

Two organizations I recommend following for climate action:

Indigenous Environmental Network

@indigenousrising on Instagram

Climate Defiance

@climatedefiance on Instagram

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