What Chronic Illness Taught Me About “Uncertain Times”

These are indeed uncertain times. I will circumvent a political discussion, because I strive to write *for* everyone, not just *to* like-minded folks or *at* folks with different views. I will just acknowledge that the current atmosphere in the United States includes a cumulonimbus cloud of uncertainty. (Hehe, no I’m not that science-y. I wanted to keep the weather metaphor going after the word “atmosphere” so I Googled cloud types and went, “Oooooh! That *is* perfect and *sounds* perfect, too!”)

I’ll share about me. I work as a professional speaker teaching about hidden disabilities, including disability identity and pride and thriving with disability as well as allyship and inclusivity. I do trainings for corporations and not-for-profit organizations, focusing on creating a more inclusive workplace, and I’m usually brought in by the diversity, equity, and inclusion (DEI) offices or an employee resource group (ERG) for folks with disabilities. I also do a lot of work at colleges and universities through disability access or diversity offices. Some of my more exciting clients have been government agencies, most recently the United States Department of Agriculture (for the Veterinary Services Civil Rights & Diversity Advisory Committee) and the United States Department of State (for the International Visitor Leadership Program). So, I’m worried for my own ability to make a living, and you can imagine why.

I created this business because I’m passionate about my message. I think it needs to be heard. I want the best possible work, school, and personal lives for folks with disabilities, and I want to help allies be their best, too. But I also created this business so I have a way to make a living despite multiple, progressive disabilities. The stakes are high for me.

I’m one story. There are countless more.

Uncertain times such as these remind me of two specific eras of my life.

One era was 2020 and everything surrounding COVID-19. The other was the onset of my fibromyalgia and the year before I got my diagnosis. The latter is what I want to talk about.

It was the fall of 2014, and I noticed pain in my knuckles. Within a couple days, I was also feeling pain in my wrists. Next, it was also in my elbows. Then, it reached my shoulders. This pain was literally working its way in to my core, in a matter of days, and by then, the other symptoms hit. Fatigue so heavy I couldn’t get off the couch. Flu-like aches in my muscles. Struggling to think, to talk, and slurred speech.

It was terrifying.

Like, at first I did all I could to just be in denial. I was exhausted. I was working multiple jobs, after all. I was stressed. But when it stayed, and when it didn’t have any symptoms of something like the cold or flu, I knew something was wrong. I just didn’t know what.

For the next year, it was “the mysterious thing.” I saw specialists, I had blood tests, I got “maybe it’s this” or “maybe it’s that” from physicians and from Google.

Here’s the thing about not having a diagnosis: It’s very challenging to move forward. I couldn’t get a clear treatment plan, because we didn’t know what we were treating. I couldn’t explain to loved ones and coworkers what was going on, because I didn’t know myself. I couldn’t connect with other people who were sharing my experience because I didn’t know what I was sharing. And maybe most importantly, I couldn’t properly grieve. Because I didn’t know what I was grieving.

Instead, I was trying to manage symptoms I didn’t understand, confusing the heck out of people with my own inconsistencies, bobbing in and out of imposter syndrome as the severity fluctuated from day to day, and instead of grieving one diagnosis, I was living in fear of all the possible diagnoses.

The day in late 2015 when I finally got my diagnoses of fibromyalgia and chronic fatigue syndrome (CFS) was a celebration. I finally had words, and those words held power. What am I treating? Fibromyalgia and CFS. What lifestyle adjustments do I need to make? Whatever discourages flare-ups of fibro and CFS symptoms. How long will I have this? For the rest of my life. (Not fun, but now I knew.) Will it get worse? Nope! These aren’t degenerative conditions. Who are my people? The fibro warriors!

Now, there is no cure. There’s hardly any decent treatment. My symptoms suck. But now I know what I’m dealing with, and I can cope, and I can grieve, and I can get really good at being the best “me” possible with what I have. And, as it turns out, I used my chronic illnesses to make the dream career I never knew to dream!

Right now, many people are stuck in the limbo of the undiagnosed. (You can even spell “limbo” in “cumulonimbus”!) Business owners don’t know what the tariff situation is going to be from one day to the next, so how can they cope, grieve, and/or come up with the new plan to thrive? It’s like the time I had to fear all the many diagnoses I *might* have instead of learning to manage the one that I actually *did* have. Likewise, tens of thousands of individuals are stuck in limbo, not knowing if they’re going to lose their jobs, keep their jobs, get their jobs back, lose their services, keep their services, keep their children’s services, win back their children’s lost accommodations, afford groceries, afford rent; it’s just an impossible, snowballing, blob of terrible. I wish things wouldn’t be terrible, but if they must be, folks need to know specifically *which* terrible they are so we can all get to work finding our way through this.

In the meantime, let me remember to you what worked for me, how I got through my own year of “uncertain times” before my diagnoses.

• I never pressured myself to feel OK about it. It was totally no fair (still is), and I held on to my own beliefs that what was happening was not OK, and I never had to think so.
• I found my allies. There were people I shared with who were immediately supportive, and I stopped trying to convince others of the validity of my experience. I had plenty of other things more worth fighting, like fatigue and depression.
• I stayed on top of the problem. I went to appointments. I did the tests. I payed attention. I continued doing my own research, which turned out to be integral to finally getting my diagnosis.
• But while I stayed on top of the problem, I filled plenty of space in my mind and heart with unrelated and joyful things, things that made me and others happy. One example is, I started a weekly stand-up comedy open mic night at my local bar and hosted it. The other thing I did was create my business as a professional speaker!

I know these are just examples, and I’m certainly a unique person, but maybe within my own coping measures, there’s inspiration for something that can help you through these uncertain times.

Some Adjacent Articles I Wrote During COVID

• How Chronic Illness Prepared Me for Losing My Livelihood
• What You’re Feeling About COVID-19 Shutdowns is a Lot Like a Diagnosis
• Weathering Your Epic Storm … on a Ship