A few weeks ago I was diagnosed with an auto-immune disease which I have lived with for about 15 years now, so it came as no surprise, in the first days of diagnosis, I felt only a sense of validation that my gut was right; that something was definitely not right and this was definitely not just the pain of herniated discs, or the fatigue of toddler & baby mom life.
There was also a sense of excitement that I could finally approach this from a different angle. Now my pain and fatigue was a disease to put into remission, as opposed to what I had done for 15 years; an injury and chronic pain to “work out” and “physiotherapy” out of me and then feel like I was failing when it didn’t resolve.
I guess my professional coaching background is a unique experience on this journey, because now I am taking the tools that I use with my clients, and am applying those very tools to myself and truly walking my own talk.
I hope to write about this in the coming days on this blog so that you can see the combination of health coach perspective and patient perspective.
In the week following diagnosis, aside from googling a TON (duh, I’m not even going to tell you not to do that, because you will…) I gave a lot of thought as to how I wanted to take this experience and shape the days and weeks to come.
I knew I needed to give myself some time to let myself feel whatever emotions were to come. In the past, I have repressed emotion which only served to intensify my pain. Many AS people will tell you a big learning for them is learning not to repress emotion.
In the coaching world, we are trained in moving one step beyond how a person acts and behaves, to understand how they see the world and how that in turn, shapes how they act and behave.
If I take this concept and apply it my own experience, I immediately think of how we let a disease shape us, or how we shape a disease. These are two distinct approaches.
When I walked out of my rheumatologist’s office with a ton of paperwork, tests to book and a follow up in a month, I realized I was on my own for the next few weeks as everything swirled around in my brain.
In the first days I decided to seek out a few scientifically accurate resource pages, and then once I felt comfortable with the science of Ankylosing Spondylitis, a few communities and Facebook groups to add to my arsenal, because I knew that the first week or two, I’d be embracing and just riding out any emotions associated with the diagnosis, and I’d probably want to talk about it as part of processing it healthily.
I joined a number of facebook and online groups / forums, and I began to notice two diverse streams of people with AS.
One stream very clearly held their AS as part of their identity, but to one extreme, where it dictated what they allowed thesemselves to do. Ankylosing Spondylitis wasn’t just the human doing life with AS; for them, it was their very being. Humans being AS. Everything was shaped through the lens (or personal narrative) of “this disease has me, and I operate from within the disease and its constraints.” Many conversations seemed to spiral down into a rather grim comparison of symptoms, fear, expression of limitations and reinforcement of self limiting beliefs.
As I read through the comments feed, I could feel some anxiety, stress, and fear stacking up as I read story after story about how shitty flare-ups are. Other people’s stories combined with my own memories of particularly painful debilitating times and it sunk me down into a crappy energy space. I found myself eating cheerios, staying up late reading, choosing gluten and dairy (which flare me – I didn’t need a diagnosis to do that) and funnily enough, making all of the wrong choices as I steeped in this mindset. I stopped going for walks at lunch and became hyper-conscious of how uncomfortable I am in an office chair.
After a few days of wallowing, general self-pity and further regression into old habits, I came across significantly more positive communities and resources. The key difference was their mindset around ankylosing spondylitis. It was much different from the first handful of communities I explored. These communities saw it as just a passing phase or even a small side lane, compared to their overall greater journey and life experience. There was a sense of confidence and growth. A fun challenge to conquer and opportunity to enhance lifestyle – as opposed to a debilitating progressive disease with no cure.
Rather than the human BEING ankylosing spondylitis, I saw humans DOING AS (among many other things.) They operated with the mindset that AS was outside of them, simply another (external) life experience happening, to be navigated through.
The disease wasn’t them, just something they were coming across, amongst many other things on their life journey.
What marked the conversations of these communities? Uplifting comparisons. NOT of symptoms, but of remission or resolution of symptoms. Courage, enthusiasm and forward-looking attitudes. Expressions of potential and reinforcement of expansive, growth mindsets.
In the week or two following diagnosis it became clear to me, as a 36-year-old mom of 3, that I could let AS draw a fence around me and remain within that yard, or I could hop the fence and look at it as a side yard (one of many) as I continued down the road.
Which brings me in a long winded way to my main point. If you are in the process of disease diagnosis, give intentional thought to the way that you want to approach it in the days to come. In the space between doctors’ appointments, MRIs, bone scans, meds and blood tests, there is you, yourself, and you. You’re going to spend some quality time with you and your thoughts about all of this. Personally, I don’t think enough attention is given to this crucial early stage, where you develop either a fixed or growth mindset around the whole situation.
Yes, you are going to have your urges – your background is going to come into play as you develop your mindset. You’re going to process the diagnosis in the way you know, in the way you have been conditioned to process it.
Perhaps you are still in a place where you repress everything and move on. Perhaps you are in a place where you’ve become more comfortable with emotions and let yourself feel some sadness, frustration or disappointment, which confoundingly occur simultaneously with happiness and relief. Or maybe you even go off the other end to sadness, doom and gloom and a pity party. We all have different experiences and different tools based on our lives up to the diagnosis.
The point is to be aware of these influences and to work with them as you choose a growth approach. A human doing AS rather than a human being AS.
Remember, regardless of your conditioned tendencies, when you come to terms with a diagnosis, there are two distinct paths that are presented to you and ultimately it is your choice which mindset to cultivate in the weeks between now and your next rheumatology appointment.
You can become your disease and live your life through it. you can sit down in that yard with the weedy grass and piles of dog poop and build yourself a 10 foot fence to ensure you never get out, or ever see the gorgeous yards of the neighbourhood beyond. And then, you can talk to neighbours with equally terrible yards, that help you build that fence even higher.
Or, you can plonk down in that yard for a bit, honour that you feel a bit sorry for yourself, step in a few piles of poop, but then decide to hop the fence, knowing you don’t just live in a yard. You can leave those neighbours behind. You can keep walking down the road, admiring and enjoying other yards with flowers growing, and know that that delipidated yard that you came from is in your rear view mirror. It’s still there, but you’re not sitting in that yard with a 15 foot fence picking up dog poop and weeding.
I don’t even know how I got into an analogy of dog poop and weeding as a way to explain how you process an ankylosing spondylitis diagnosis, lol, but there you go, it happened as I typed.
But you know what? It made sense to me, as someone going through this very process right now. I hope my combined perspective as health coach and patient is helpful as you negotiate your own way through the weeds and dog sh*t and bust out of that yard and design your days ahead of you.