Leaving a passion behind.
Leann FirestoneThe story of how my career as a hairstylist was ended by my worsening disability.
This is a story about the rise and fall of my career as a hairstylist. It depicts experiences that have actually happened to me, I have kept all names and personal details confidential.
Let’s start from the beginning so you can understand how important this career actually was to me. Much like my own daughter (who turned 9 this year), I remember being around that age and getting so angry at my mom who just couldn’t get my hairstyle perfect—the way I envisioned it! The braids would be crooked or there would be bumps in the ponytail. (Sorry Mom… now I get to deal with my own little version of me.) I started to do my hair shortly after that. I had her teach me, and I just figured it out myself. Then I had the pleasure of watching my aunt start her career as a hairstylist. (My mom’s sister, who was in her 20’s then) did all the hair of our family members in my grandma’s house, in small salons, and then in her own salon. I really enjoyed watching her, and I started picking up her skills and practicing them on my dolls. As I aged, the experience on my dolls then turned to the hair of my friends or on my own hair. I was often braiding and trying new styles!When I was in 6th grade, we wrote letters to our older self that our teachers sent to us when we graduated high school 6 years later. In the letter I said I wanted to be a hairstylist when I grew up, along with some information about what my favorite foods were back then.
Over my high school years, I followed through with my dream and went to a vocational cosmetology school. (It was a half-day program I attended from 10–12th grade.) For my entire senior year, I was doing all of my friends’ haircuts and practicing all I could. I even had a job as a receptionist at a salon.When I graduated high school in the summer of 2008, I also passed my cosmetology test and dove into my career. There were a very small number of clients that I met during these years who stayed with me until the end, but it was mostly a few transitions until I found my home at the last salon in 2014 and was able to really grow my career.
Before we jump into the next part, I also need you to understand my disability at this age. When I was 18, the only idea I had that my body was different was that I was very bendy and flexible, I had some asthma that was triggered by animals and exercise, dental issues, glasses, and that some of my joints made weird clicky noises when I moved in certain ways. I had an ADHD diagnosis at this point but not an autism diagnosis, and no one even would have understood my other illnesses back then because we had little information on them in the 90s/2000s.All of the things I did bring up and the cardiac testing I had as a kid were just misdiagnosed and brushed off as anxiety. So in my 20’s, a few years before I got married and pregnant, I was working full time and really enjoying my job and started growing my book of clients. I also was starting to have very minor pain from core weakness and standing with my arms up, but I attributed it to my job and the use of the same muscles and starting to age (this was the hEDS starting).I started losing weight and working out but still had to avoid cardio because it still triggered my asthma (which is actually POTS-related). Doing all of these things helped me to manage my health. I didn’t have any daily pain or limitations at this point in my life. I was thriving and even started doing some marketing for the salon (which I went to college for while I was working at the salon).
After a few years, I transitioned to a new salon that would become my home for the next 11 years. In 2016, when I was a few months pregnant with my daughter, my pain really started flaring up and I started experiencing signs of pelvic floor dysfunction. I also started having numbness in my legs at this point. This was all blamed on my weight gain or pregnancy in general, and I was dismissed.I worked through my pregnancy up until almost the end, which ended up being 43 weeks of gestation… I know it was ridiculous and I still had no idea I had all these diagnoses, which didn’t help. I had a C-section after a few weeks of attempting laboring, and I went back to work at the salon very quickly because I didn’t get maternity leave and we needed to pay our mortgage. I had already been off longer than I imagined because she was born 3 weeks after her due date.I came back with passion, but I came back part time so I could still breastfeed and spend time with my daughter.
As you guessed it, though, after I had my daughter my health got MUCH worse, starting with the terrible pain in my back, glute, hip, and leg numbness, and my pelvic floor dysfunction such as pain with urination, peeing when I sneezed, etc. So I sought out some professional help. This was my very first time at physical therapy, and I had no idea that I would actually be in pelvic floor therapy for the next 6 years.I had no idea that I had endometriosis that flared and started growing when I was pregnant, and no idea that POTS gets worse with hormonal changes such as having a baby, breastfeeding, and the endometriosis. I had no idea the pelvic floor dysfunction and vaginal and rectal prolapse I was experiencing as a 28-year-old was related to hEDS.It wouldn’t be until I turned 30 in 2020 that I discovered I was Autistic, and then I found the common co-occurring genetic disorder Hypermobile Ehlers-Danlos Syndrome in 2022. It took me a few years to actually get a proper diagnosis and get in with an appropriate care team, but once I did, I was also able to get a diagnosis for Postural Orthostatic Tachycardia Syndrome in December 2024. I am just reaching my one-year mark of being medicated for this.
Each year from 2016 to the present, as I was trying to seek out a diagnosis, my body slowly became more affected by my syndrome. As my endometriosis got worse and I got COVID a few times, all of my symptoms became way worse.I didn’t want to give up my career, though. I had become a specialist in vivid color, and I was being requested by new clients who were willing to pay for my experience and time! I actually had become one of the top-earning stylists per hour, and I was at the point I wanted to be in my career. But at the same time, I had to keep asking for more help from the staff and started slowly cutting my hours every 6 months.Standing had become harder, holding my arms up had become painful, and my hands and feet were going numb from using them for too long.
I’m not sure if my clients noticed because I hardly noticed. The descent of my health was slow and steady. In 2022, I started sitting on a stool; eventually, I sat on the stool a lot. I started wearing braces to work, but I was hiding them and no one knew. I was going to work and then going to PT to help me correct the pain from my job, but I didn’t know that wouldn’t be sustainable forever.
In 2023, after a few years of gaslighting, I was diagnosed with stage 4 endometriosis and had a full hysterectomy (I only have one ovary left). Since then, my POTS has gotten much worse, and my body has aged more quickly. The reality of gravity is a big factor in my hEDS. By 2024, I wasn’t working much, and I started to shift my career to my passion, which was now nonprofit work, trying to help others find their diagnosis early and seek out help instead of being older like me before they understand.
In 2025, my pain got so bad that I couldn’t keep up anymore,I had to stop working. The way I left was rather abrupt, and I never really got to process it properly, so telling the story is kind of helpful. I texted my boss in March of 2025 and said I needed to have a meeting with her. In that moment, I had no idea it would be my last meeting as her employee.
Upon going into her office, I started telling her about how ill I was, about how I had to heal my body for a whole 5 days after just working 2 short shifts. I told her how I was crying and having autistic meltdowns on Sunday and Monday before work, how it was crushing my mental health because I was in so much pain and distress. I could no longer care for my clients the way I did before; I could barely focus on what they were saying, let alone the styling of their hair, because I was in so much pain from the client before them. My POTS had gotten worse, and I had my service dog with me every day because I was having episodes of passing out.My boss, who is filled with compassion and love, told me in the kindest way that it was time to go. My immediate response was: How? I can’t tell all of my clients what is going on… some of them don’t even know I am sick or diagnosed with these things. My mental health can’t handle that. She replied with the best answer: Don’t worry, we will take care of it for you.
With the help of the staff, they let all my clients know that I would be retiring from doing hair and pursuing my goals at my nonprofit and helping my community. They didn’t tell them I was sick, some of them may never know, and some of them may still be mad at me. What they did for me was help me through 50+ uncomfortable situations and conversations. For some reason, it’s easier to talk about it all at once through a keyboard than it is to tell a few people in person…
So here we are, 10 months later, and I’m finally ready to tell everyone about it. I’m finally healed enough to formulate words. They may not make sense to everyone still, but they are my words. I really miss my job. I really miss making creative, beautiful styles. I really miss being a safe space for my clients and helping them feel amazing. I miss all my coworkers and the connections I built over the years. Leaving quickly was harsh and hurt, but it was the only way my autistic brain and chronically ill body could handle it.I am really glad I stopped when I did because the entire year of 2025 has been worse on my health, as I am having constant GI issues. I am scheduled to have gallbladder surgery soon to help with this.
You may be asking, how are you making any money? Well, I am not…
Coincidentally, I am also going through a divorce. I know, right? My life… So I am living in my parents’ house on no income and getting benefits such as SNAP and Medicaid because I am unemployed. I was denied unemployment after fighting for 6 months through 2 appeals because I am the director of a nonprofit, and in their opinion, if I can volunteer, I can work. I am in the middle of a legal case with my disability attorney and the SSA at the moment, proving this and much, much more to earn a small wage from the government each month. Once I have a promised amount from disability and my divorce settlement, I should be able to plan more, but for now I’m stuck in a limbo.
I have no idea where my future is going to lead, but I know that unfortunately, hairstyling is something I have to leave behind forever, as well as any career that takes full-time work or the use of my weakening body. It seems sad, but in the end, I am grateful I have more time to enjoy the rest of the time I have here on Earth.
So, if you made it this far, thanks for reading. And if you are in the same place, I am sorry you had to join this club.
Much Love,
Leann Firestone
If you want to learn more about my brain and thoughts, as well as insights from other neurodivergent people, check out our older blog posts. You can also explore other parts of our website to find resources, donate to our non-profit, learn about our community center and more.
