Have you ever heard of ankylosing spondylitis (AS)? My guess is no, because I had never heard of it until I was diagnosed with it. AS is an auto-immune disease mixed within a sea of many auto-immune diseases,which most you’ve probably never heard of either. I hesitated when I thought about writing about this disease and my story, because quite frankly, it’s kind of a bummer to talk about. And as a busy hairstylist, the last thing I want are clients fearing that I’m sick or hurting and not come to see me anymore. But then I realized I was being silly, and how important it is for me to help spread the word about AS. There is so little information out there about this disease, and if only sufferers got diagnosed when onset starts, there would potentially be much less disability and depression associated with having a degenerating disease.
So to explain AS in simple terms, it is a disease located around the SI joint. To get diagnosed you need to get lots of blood work, x-rays, MRI’s, all to confirm an abnormality at this joint. Essentially, AS in an auto-immune arthritis of the spine, and the inflammation attacks the connective tissue between the vertebrae, muscles, ligaments, and joints. It’s core strain is on the low back and spine, but many sufferers have tremendous pain in their hips, knees, feet, neck, shoulders, and small muscles of their hands. Over time, many people with AS actually fuse in their spine or hips. Your bone literally creates a solid column of a spine which causes permanent hunching, and if your hips fuse you basically walk like a penguin. If you’re a Motley Crue fan you may know of Mick Mars, who has AS and is completely fused, hunched, and 3 inches shorter than he used to be (and pretty bad ass I may add).
So here’s the kicker about AS. Most people’s onset is around 15 years of age. Most people don’t actually get diagnosed for 10-15 years after that onset because the lack of attention to the disease in the medical community. The first time I had a severe flare up I was 17, and I literally couldn’t breathe the pain was so unbearable. My dad took me to the hospital and the nurse smirked at me and told me I pinched a nerve and to relax. I had these sort of flare ups time and time again, sought help from doctors, chiropractors, acupuncturists physical therapists, to no avail. Every doctor tried to treat me with pain medications, which did nothing. I didn’t get diagnosed until I was 28, so what damage has been done in the past 11 years? Having a degenerative disease means the damage done cannot be reversed. Why didn’t a nurse or doctor ever consider that something much deeper could be wrong? They always said I ”looked” fit and healthy and it was possibly from wear and tear on my body from my profession as a hairstylist. I begged for an MRI about 4 years ago after another flare, and the doctor refused because I wasn’t ”bleeding from my head”. Yes, they said that to me. If only people got properly diagnosed early on they may not have had to go on disability, they may still be able to be active, they may be able to pick their kids up and play with them, they may not be stuck in a wheelchair…
So how I finally got to where I am now is actually through an eye issue I was having. Everyone needs to learn from this part of my story, because your body is powerful and may be trying to signal you for some immediate attention. In 2% of people with AS, the disease can attack the lungs or eyes. I started having painful issues with my eyes about 2 years ago. Doctors thought I was allergic to something, that maybe it was the chemicals at my work place, blah blah blah. Never got to the the root of the issue, but I’d have flares every 4 months and they got worse and worse. The biggest red flag with my eye pain was the light sensitivity. My cell phone light even blinded me in pain. Then out of the blue, my retina tore. Not sure if you know this, but young peoples retina’s don’t tear! I woke up one day, and had black squiggly lines everywhere in my eye and couldn’t see there were so many. After a laser procedure to close the tear, my opthamologist finally said I needed to get blood work done because my body was attacking itself. At this point, I didn’t even consider all my body pain, and would have never thought that this eye problem could have actually been brought on by a spinal disease. But sure enough, it was.
I had actually accepted my limited mobility about a year ago. It was as if my body was slowly breaking. My workouts created so much pain, my hips felt like a pair of 80 year old hips, my hands hurt so much, and my feet became so jacked up in pain I stopped wearing heels on a regular basis, which was huge for me! When you live in pain you don’t know how to compare what you feel to others you know? I knew I hurt, and it seemed like my friends didn’t have troubles getting up from chairs, but ‘oh, well’ this was just my life. Never did I think that it was a disease that was slowly eating me on the inside.
Treatment for Ankylosing Spondylitis is a must. It’s important to try to halt the disease and get it at some sort of standstill. Medication doesn’t work for everyone, but i’m in the beginning stages of trying it. Pain pills don’t really help the pain or fatigue associated with the disease, so inject-able medication seems to be the best option. Diet plays a huge role in overall health and disease prevention, so I’m taking that avenue as well.
There is no cure, and I’ve met many nurses who sadly have never even heard of the disease. This is why I decided to share my story, and educate anyone willing to learn about Ankylosing Spondylitis. My hope is one day kids will be heard and not judged. My hope is that people will know about AS like they know about MS and Lupus. With awareness there’s hope, prevention, and healing.
As for me, I’m doing good. Since I’m used to living the way I do, it really hasn’t affected my life much. The biggest and hardest way it’s affected me is through my workouts. I’m a freak for high impact, bootcamp, sweat your face off type workouts, which ruin my body now. I’m competitive with myself and always want to be the strongest, fastest girl in my classes! I’ve now learned to stop pushing myself and to listen to my body. If I think I can go for a jog then I will try. If I can barely walk because of the pain, I will take a day off from exercising. This is how it has to be, and i’m coming to terms with that. I’ve learned to be more compassionate for people with disabilities, and just more compassionate in general. And if AS is the disease i’m stuck with, hell I’ll take it. I believe in the power of the mind, and with a strong mind you can overcome anything. I feel lucky if this is the hurdle I have to get over, because I could very well be laying in a hospital bed fighting for my life.
Now you know what ankylosing spondylitis is. You know how it affects a person with it. If you can relate to any of this, remember, YOU need to be your own advocate and listen to your body.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.