WHAT IS WRONG WITH ME?! Life without a diagnosis.
Writing this is probably going to make me upset.
I struggle to say that I have a chronic illness, because although for several years I have had various chronic pain flares, nobody has been able to put a name to them.
It all started with scoliosis: a condition in which the spine curves and twists. In my case, my spine curved and twisted so much that it began to crush my lungs. Looking back on it now, my first awareness of this was when I had constant asthma attacks in Physical Education classes at school. Thirteen-year-old Kathy would barely make it through the warm-up before having to disappear inside for her inhaler. The teachers thought I was faking it, and even subjected me to one particularly humiliating experience that I’d rather not talk about. Sure enough, some months later we discovered the root cause of the problem and I was signed off from PE indefinitely. But because I didn’t have a diagnosis back then – not even of asthma, initially – the teachers didn’t believe me. And they didn’t care.
The pattern has continued, in some ways. I can’t remember when I first regarded my chronic pain and lack of physical ability as something other than a product of my scoliosis. Possibly late 2019 or early 2020. For at least three years I merrily chalked it up to my back problem, which was ‘fixed’ (or as much as it can be) in 2017. But then I started to wonder… is it really all just my back? When I started to get hip pain in late 2019, I at first thought it was an injury from when I had a metal gate fall on me that summer. (Long story, and it requires a diagram.) Then when it didn’t go away, I wondered if it might be something else. But I was a student – I had a million and one other things to think about.
I volunteered as an equine handler back then, and I slowly started to see my abilities there reducing. They were very understanding of my back problems, so for simplicity’s sake I once again chalked up all these new problems to that. But I was really starting to wonder if there was something else going on… like a connective tissue disorder.
Aaaaand then the pandemic hit.
In May 2021, I finally got to see a rheumatology consultant. He was very thorough, looked me over, poked and prodded, and told me he was almost certain I didn’t have a connective tissue disorder (although I did have some of the signs, like scoliosis and hypermobility and heart problems). We left, and thought the whole business was put to bed. Until I got a letter through the post, suggesting I have genetic testing. Turns out my Cardiology consultant (who’d instigated the rheumatology appointment in the first place) had intervened and said “No, I’m still not happy, this needs investigating further.”
It was ten months later that I had the appointment for genetic testing. I went to a big hospital in the city, where I was poked and prodded some more, and after about an hour the consultant looked at me and said – once again – “I’m not really sure what to make of this”. She said she’d discuss it with her colleagues and see what they thought, and take some blood for genetic testing in the meantime. It would take upwards of four months to get the results.
And that’s where we are right now. Her colleagues didn’t seem to have much of a clue either. I’m still stuck without a diagnosis, and so I don’t feel that my pain is truly valid. (Tell that to my hips, they were hurting like hell the other night when I was trying to sleep.) I struggle with talking about my chronic pain, much less doing anything to help it. It was only last month that I started using a mobility aid when I’m doing a lot of walking.
It feels like everyone I see online talking about their chronic illness knows what their chronic illness is. And thus it makes me feel invalid. Which is wrong, I know. Just because it doesn’t have a name doesn’t mean that it’s not there, not affecting my life. And this is the narrative that needs to be pushed more. When I use a mobility aid, I get so many looks (some curious, some death glares) that it makes me feel like an imposter, because I can’t just turn around and say to them, “Actually I have XYZ condition.”
And it also makes me wonder if I’m faking it. I’m not in excruciating pain one-hundred-percent of the time. Right now, in fact, I feel fine. The narrative I seem to see is that people with chronic illness are in pain every second of every minute of every day. And for some, that is the case. For me, it’s not. Does that mean I’m faking it?
Such are the perils of life without a diagnosis. I hope to make some progress soon. My latest lead to follow is Chronic Fatigue or Chronic Fatigue Syndrome. I tick all the boxes – it’s just a case of finding a doctor who will listen. I will update this blog, or write a new one, in time.
If you’ve been through similar, please let me know I’m not alone. It can feel like a very lonely road we’re on, especially without a diagnosis.