Whether it be movies, books, or social media, we are inundated with the attraction of being a badass. It might be the quiet, humble hero or the “genius, billionaire, playboy, philanthropist.” We look to these people because they are confident in who they are and they make a difference. My stepdaughter’s first swear word was “B.A.” (short for badass because she was terrified of how we’d react if she went around swearing) and whenever she felt great about something she accomplished she’d call herself “B.A.”
For most of my life I chased after the badass title. Think Pepper Potts, not the A-Team. I wanted to contribute to the success of companies and people, have high standards, and make good money while doing it. It came through by becoming an overachieving workaholic, and happily dedicating seven years to the success of Command Prompt’s team and clients. I also wanted to be an adventurer, wildlife photographer, homemaker, and all around cheerful person because life is too short not to be. To me, this was being a badass.
Then in 2020 amongst the COVID panic, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Fibromyalgia, and MCAS.
Per the Ehlers-Danlos Society, “Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins.” Check out the symptoms list and welcome to my chronic pain-filled present and future.
It took a long time to process the diagnosis, and even then it didn’t seem real because there is no cure. Treatment varies based on the person, and most doctors haven’t heard of the condition. The average time to be diagnosed is over a decade.
Thinking back to everything I’d experienced, it started to make sense. My symptoms weren’t yet debilitating, but they weren’t normal either. I used to kickbox, belly dance, rock climb, backpack, and in the last couple of years I became unable to do those things. I started to hurt every day. My balance got worse, I bruised easier, and I was tired. I became more introverted and preferred books over social outings. I assumed it was the normal process of getting older, but as time went on even that didn’t seem right. The hEDS and Fibromyalgia diagnosis gave me a name to assign to it, and time allowed me to begin the phases of grief that I had to go through to accept that my days of badassery were over.
I gave so much of myself to my company that when I was finally able to process my diagnosis, my main concern outside of how to continue to be a housewife/stepmom was how to continue being a passionate overachiever for the Postgres community and for Command Prompt. How will I be an effective manager when I’m in debilitating pain? How will I lead projects and ensure client success when brain fog hits me? How will I show leadership to my team when I have zero energy?
I fought with this for months, wanting to hide my condition from colleagues and clients in order to keep meeting the high standards I set for myself. When a colleague came to me with a prompt for writing this blog that included my diagnosis, tips and tricks for working with a draining disease, and how to manage chronic pain, I thought “hell no, I’m not writing about that.” Accepting that I have chronic pain that will just get worse as I get older is hard enough; admitting it to all of my professional peers and discussing how I cope is another.
Then I started thinking about others with this diagnosis. Would I ask them to conceal a part of who they are because they want to meet the same standards as everyone else? Would I expect them to not show kindness and grace to themselves when they’re having a day full of pain? No – I would expect them to embrace their condition and be who they are. I would want them to continue to succeed and stand with their team, and have the team know what it takes for that person to show up and still have a smile on their face when they are fighting symptoms most will never experience. I would expect them to stand up and be a light for the rest of us who need to see what true badassery looks like.
“They say the power behind something great comes from a place of vulnerability.”– Brene Brown on the Power of Vulnerability
Awareness is more important than my fear of vulnerability.
I started by participating in the EDS Society’s Acts of Awareness Challenge, addressing prompts across Instagram, Facebook, and Twitter about my personal journey. I set up this website with the goal of helping other Zebras through this, and I started telling more of my colleagues. I worked with JD Drake, one of my co-owners and best friend, to put out a newsletter to thousands of people about invisible illnesses and EDS from the Postgres Conference. Most importantly, I decided not to let this disease define me and by doing that, I am redefining badassery.
My new version of being a badass is getting S&^% done in a zebra onesie while being out of my comfort zone all of the time. I will have to ask for help, and that’s not something I enjoy doing. I will continue to fight for the success of my team and my clients every day, and I’ll sometimes have to do so with a heating pad. I will have good days and bad days, and on the good days I hope my colleagues are prepared for the pent up productivity I’ll be making up from the bad days (sorry Tiffany). I will advocate and do everything I can to increase awareness for this disease, hoping that someday there is a cure.
The more I think about chronic conditions, from cancer to EDS to mental illness, I can’t help but think, “wow.” I spent so many years unaware of the challenges they face every day. We get wrapped up in first world problems that we fail to open our eyes to people in our own lives who have something beyond the normal. We make snap judgements, and we don’t take enough time to get to know what people are really going through. I hope that someday this changes.
For those who have a chronic condition and keep going, I stand vulnerable for you. To those with EDS, Fibromyalgia, and chronic pain. To those who are disabled. To those who have given up their dreams because of a medical condition. To those who stand beside and fight beside those who have a chronic condition. To those who are considerate and kind to the genetically faulty. To those who overcome whatever life throws at them, chronic condition or not.
You are the ones we should look up to. You are the ones our children should be learning about. You deserve the applause that is given to fictional characters on our screens. You have to work harder and suffer more. You have to be more cautious and fight longer. You are a warrior every day you get up and don’t give up. You are one of those who define badassery.