My Spondylitis Story
This article has been taken from Chapter 9 of my book – Taking Charge – Making your healthcare appointments work for you.Published: January 26, 2021 | Last Updated: August 27, 2023
The beginning and the misdiagnosis
In keeping with tradition, permit me to start at the beginning. As to when that was, I’m somewhat hazy. That might seem strange to say. Surely I’d remember when I had my first symptoms, but I can’t say with accuracy. This in the most part is due to the symptoms themselves. Do you remember the first time you got back pain? Unlikely, because it probably went away for a while. It may have even come back once or twice more, but each time it went away. But after a few times spread over months, or years, you decided maybe you should get it checked out. And being a stubborn young man, I waited until it was at its worst and causing me to miss work. It all started, from what I can recall, in the beginning of 2007, just a year or so into my nursing career.
The problem with Ankylosing Spondylitis, like many chronic illnesses, is that it often starts with common symptoms, which could have literally hundreds of causes. So with a lack of evidence to prove otherwise, it is misdiagnosed as something more common. That certainly was the case for me. I saw my GP in the United Kingdom several times over the course of a year or so, for what I now know to be flare-ups and the awakening of my illness. Each time it was the same — I had lower back pain and sciatica, so the doctor gave me painkillers. A nurse with lower back pain isn’t exactly a rarity. It’s almost part of the job description. My managers were amazing (I didn’t appreciate it back then), and they sent me to see the occupational health doctor. This is basically a doctor for doctors and nurses. They are employed by the Trust (healthcare provider) to help keep the staff well and productive. My occupational health doctor said something that created a spark that ultimately led me to my correct diagnosis.
After my examination, he told me I didn’t have chronic back pain. I was too flexible in my lower back, and the physical exam didn’t match my symptoms. Instead he told me I most likely had inflammation in my sacroiliac (SI) joint. My sacro-what-now? I was a nurse, but we never covered this in anatomy and physiology class. He briefly explained what it is, and told me it happens sometimes, and that I was best to take anti-inflammatories and try to keep it moving. He referred me for a course of physical therapy. This pattern continued for far too long, and I just kept going along with it.
The unlikely heroes who changed my life
Fast-forward nearly two years, and I had moved to a new job in a new city. After a particularly bad flare-up, I couldn’t move without being in extreme pain, and I could hardly walk. I saw my new GP, who said the same as the last. Urgh. Same old. More physical therapy. Then one day, after a few days off sick for another flare-up, I was talking to one of the temporary doctors in the intensive care unit where I worked about my problem. He noticed I’d been off sick (he must have missed me). He was in the Royal Air Force (RAF) and was on a rotation at the time. He said, “I assume they ruled out the serious stuff first, like Ank Spond and stuff?” He wasn’t convinced when I replied with something along the lines of “Er... I assume so.” He told me to ask for a special blood test called HLA-B27. I made a mental note. Back then I went to my appointments, sat like a good boy, listened to the doctors, and hoped they knew what they were doing. I wish I could go back and change that. If only I knew what I know now. I never forgot what the RAF doctor had said to me. I wish I could remember his name and rank. I owe him a few beers and a big thank-you.
The next time I went to the doctor I decided I would mention this, and I did. But as luck would have it, I didn’t need to. My usual doctor was off sick that day and there was a stand-in doctor covering. She was a young doctor recently out of medical school. Those are the best kind, because they haven’t been marred by years of abusive patients and monotonous routine. After I described my problem, she looked up something on the computer. While she was looking, she mentioned doing a blood test—a HLA-B27. I then told her what the RAF doctor had told me, and she said that was exactly what concerned her. Unfortunately, this test took several weeks, because it had to be sent away to a special lab. While I was waiting for the results, I had another flare-up. I saw my regular GP this time, and she was less than pleased that the substitute had ordered such an expensive blood test (it comes from the GP’s budget). She said the results were not back yet but that, “if it comes back positive, which I would be surprised if it did,” she would refer me to a specialist. She was left to eat her words.
The worst appointment ever and my realization
The consultant rheumatologist I saw on my first appointment was delightful. She confirmed that ankylosing spondylitis was a possibility, but that it was possible to have a positive HLA-B27 test and not to have A.S. (In fact, only one in 15 people who test positive for HLA-B27 go on to develop A.S.) She ordered some X-rays and an MRI scan, and asked me to see her when the results were back. She warned me there was an eight-week wait for non-urgent MRI scans! It was the longest eight weeks ever. I went back for my second appointment for the result and saw who I now assume was the consultant’s registrar (her second in command.) But I don’t know for sure, because there was no documentation with his name on it! He told me that my scan showed signs of early A.S. but that it was not definite. He said, “If it’s not, then it’ll go away eventually. If it is ankylosing spondylitis, then your SI joints will fuse together and your pain will go away, so it’ll be fine.” To this day I cannot repeat those words without getting incredibly angry! He didn’t go over treatment with me at all. What I heard from him was, “Deal with it, tough shit,” even though those words didn’t leave his mouth. Now that I know about A.S., I can tell you that I cannot think of anything worse to say to a patient. At the time, I was in shock. I didn’t respond to or question him. When I got home I cried. I cried in anger. Not only was I angry at him, but I was equally angry at myself for just accepting it. Why didn’t I say anything? Why didn’t I inform myself? What the hell was I playing at? That day changed my life. Without that horrific appointment, I wouldn’t be writing this book. A switch was flicked and a fire was started in my belly. No more. I was going to take charge of my health from now on.
The big smoke and my darkest days
Before I could see a rheumatologist again, I got another new job in the big smoke (London). So I packed my bags and moved. I hadn’t been there long when I suffered my worst-ever flare-up. I was off work for three months, and it took me around fifteen minutes to walk to the bathroom. It was twenty feet away. Those were my darkest days. I slipped into depression and became reclusive. I have only my wife (who was my fiancée at the time) to thank for getting me through it mentally. I can’t thank her enough.
I saw my new rheumatologist at this time. He was a no-nonsense chap, but boy, was he thorough. I got the best care I have ever received from him, not because the first thing he did was “officially” diagnose me, but because he taught me so much. He didn’t give me literature to read (which is my only criticism of him), but he taught me by showing me what was actually important and what wasn’t. His no-nonsense approach was his filter. He filtered out the irrelevant information, which left him with the core aspects and problems that needed to be addressed. And he was certainly proactive with regard to treatments. He started me on a biologic medication (also called anti-TNF medication) that altered my immune system, immediately. Soon my dark days were over, and I began to realize taking charge of my health and being informed were the best things I could do for myself.
The first step I truly took in taking charge of my health was finding and getting in touch with the National Ankylosing Spondylitis Society (NASS), the United Kingdom’s only dedicated ankylosing spondylitis charity. If I have one tip for anyone newly diagnosed, it is to find your local A.S. charity. They will help you more than you would ever think possible and inform you so you can make good, solid choices about your health. The equivalent in the United States is the Spondylitis Association of America.
Acceptance and redirection
One of the hardest parts initially about being diagnosed with a chronic illness is truly accepting it. Knowing that there are things you can no longer do, that you once enjoyed, makes it hard not to get angry. True acceptance is being thankful for the things you still can do and feeling positive about the new things you now get to learn and do.
Learning to accept your condition is not the same as giving in to it. A condition such as A.S. needs to be fought. If you lose motivation and willingness to do so, you’ll succumb to it, leaving you in increasingly more pain and becoming more disabled. Unfortunately, this may still happen even if you don’t succumb to it, but it would be even worse if you do.
I’m afraid I have no words of wisdom as to how I achieved acceptance; I’m not a psychologist. Maybe it is different for everyone. All I can tell you is that it took me years to truly accept it. Once I did, things started to get a lot easier.
Once I realized that A.S. was a degenerative condition, I knew I’d have to do something about my chosen career path. I was unable to physically manage working on an intensive care unit without causing myself great pain. So I decided to take a sidestep and head in a different direction, to pre-operative assessments. I’m not going to lie: No more night shifts or weekends also had quite an appeal to it. I knew a physically less demanding job, a “desk job,” would be a better fit for me. My new job made me realize I had no idea how the system really worked. It was a steep learning curve, to say the least. And that’s when it dawned on me that I could use what I learned at work to help me in my own healthcare appointments, because knowing the system helps. And, without me knowing it at the time, the idea for this book was formed.
I spent the next five-plus years trying to do what I could to stay on top of my condition. I didn’t always manage it. But each time I failed, I learned. I adjusted and moved on. At one point I had every medication thrown at me, so many that I rattled when I walked, but I somehow felt better off them. With no real improvement in my symptoms, the medications dropped of my list one by one. I saw this as a good thing.
Then came the second-biggest change of my life (the first being fatherhood): We decided to emigrate to the United States. My health and the change in healthcare system certainly was a big consideration, but we decided to go all the same. How exciting!
Crossing the pond
In October 2014, I became an expatriate, leaving behind all my friends and family. It’s tough to leave people behind, but at least there is comfort knowing the barriers to staying in touch that once existed no longer do. The internet has been a big help, not only with email but also with video calling.
My first challenge was to master no longer being the breadwinner, and instead taking on the role of the stay-at-home parent. The second challenge was to navigate the new healthcare system. Research will only get you so far—you have to experience it to truly understand it. I’m still working on mastering the new healthcare system and being a stay-at-home dad, but you never know—any day now...
By using my approach to my doctor’s appointment, as I’ve outlined in this book, I was able to start developing a good relationship with my rheumatologist. Unfortunately, just as I was making good ground, I had to change insurance providers and find new doctors. My new doctors are great, especially my primary care doctor, because I was determined to start off on the right foot so we could develop a positive relationship.
Despite good working relationships with my team of doctors, my health was not in a good place. It had been far worse, but it had also been far better. One of the hardest parts about being a stay-at-home parent is the close proximity of the fridge. It’s always there calling you, asking you to drink sugary drinks and to consume unhealthy snacks. Even before I moved across the pond, my weight had slipped, and now it was even worse. This is a problem in A.S.: More weight means more stress on your joints. It had also been a long time since I worked out, so my core and back muscles were not in good shape. My daily pain levels were gradually rising, and my stiffness and fatigue were worsening. I knew what I had to do, and I knew why. I just needed to find the motivation to do it and to succeed.
Thankfully I found my motivation. It was staring at me with greasy fingers asking for more chicken nuggets. My kids were my motivation. How could I raise them to be healthy, responsible adults if I continued to shirk my responsibility for my own health while I stuffed my face with a greasy hamburger? If I wished to instill these values into my noisy offspring, I would have to lead by example. No one ever learned anything from a hypocrite.
In many ways, the easiest and the hardest part was changing my diet. It’s hard to form new habits and to break old ones, but with a strong enough motivation, anyone can do it. So, armed with a new calorie-counting app and a hundred blog posts that contradicted each other about how to eat healthily, I began the task.
The next task was to get into an exercise routine that was a) conducive to my A.S., and b) one that would hold my attention, thus increasing my chances of it becoming part of my lifestyle, rather than a New Year’s resolution that I would give up. What I settled on was one of the best decisions I’ve made in my life. I started training in martial arts again (I had as a child from about 8 to 13 years old). I started training in kempo, or, to be precise, Shaolin kempo.
Clearly not everyone with A.S. is able to train in martial arts, but I think most people have misconceptions about how much they actually can do. Your body, even a diseased one, often can achieve more than you think, and a good martial arts instructor will be able to adjust exercises to meet your needs and to help you achieve your goals. My outcome after eighteen months of training was astonishing. I dropped 30 pounds, and I’m no longer classed as overweight. I’ve become the fittest, and strongest, I have ever been, especially in my core, which is vital for someone with A.S.
As a result from these two changes in my lifestyle, I have reduced my medications to a minimum, and some days I have almost no pain. Without any of that, I doubt this book would have come to fruition. I wouldn’t have had the energy or concentration because of my pain. If you’re interested, you can read the start of my kempo journey here: https://www.potomackempo.com/student-essay-ricky/.
What’s important is not what I did to help my health but how I achieved it. Of course eating better and exercising more will help anyone, but I chose to change those two things because they would have the biggest impact on my health. I ignored how hard it would be, because I knew it was achievable. Saying you can’t do something before you’ve tried is foolish. Likewise, not doing something because it’s too hard is just as foolish. The hard part isn’t the task itself—that can be overcome with good planning and research. The hard part is changing your mindset. Once you’ve done that, you can achieve what you once considered hard. Pick the most important thing about your illness you can change, and set plans into action to change it. Don’t consider how hard it will be; just try. You’ll be better for it.
My story hasn’t ended yet, thankfully. I hope it will continue for many, many years to come. But for now, I’m in a good place. Settling in a good place makes complacency even more dangerous. I always feel happier when I’m going forward, even if my health isn’t. It won’t go forward; A.S. is degenerative. The best I can hope for is that my symptoms become stable. But that won’t stop me trying to do more to help myself. And despite writing this book, I know that I’ll continue to learn. After my dark days I started an A.S. blog, endlesstrax.com. This helped me gain clarity and perspective on my health and being. I realized it was more important to focus on the things I still can do (especially the ones I do well) than it was to look at the things I no longer can do. Grieving over the loss of function, and being made to feel helpless by having something “taken away,” no longer served a purpose. I was done defining myself by my condition and by the things I used to do. My perspective, through my writings, changed. I was now defining myself by celebrating what I could do and what I still wanted to achieve. Back then, if you were to ask me to define myself, I would have used words like “nurse” and “ankylosing spondylitis sufferer.” Now, if you were to ask me, I would say: “father,” “husband,” “martial artist,” and “bonsai enthusiast.” I will also use words that define my work, such as “writer” or “entrepreneur,” but they might not even make the top five. My perspective has changed to concentrate on the things that matter to me. If your work truly makes you happy, that’s great. But if it doesn’t, my advice would be to focus your energy on the things that do make you happy. It may be something already present in your life, or maybe it’ll be something you’ve always wanted to do, like write a book...
I like quotes. There is pretty much one for everything. But the one that is resonating with me these days is by some chap called Albert Einstein. He (apparently) once said, “Once you stop learning, you start dying.” It resonates with me because that’s how I approach life now. I always have to be learning something. This is especially true when it comes to my A.S. and managing it. My condition will change and evolve. It already has, so I need to understand why it has, and what I can do to change with it. This might be true for everyone, but I know I will succeed or fail by my ability to adapt to the changes that face me. In order to adapt I need to learn, to keep an open mind, and, most of all, to love myself for who I am and for who I have become. I would implore you to strive to do the same.
My book Taking Charge: Making Your Healthcare Appointments Work for You is available as an ebook, paperback, and audiobook.