The last couple of years have been a glorious roller coaster of diagnosis, treatment, and rapid changes to my quality of life. I started out as a person who was constantly exhausted and in pain and unable to focus on anything, stressed and overwhelmed, watching my life slide away from me while I tried to get things done and failed, needing to rest and work out and rest and work out and everything else fell by the wayside.
It’s been frustrating, miserable, and overwhelming. It’s eaten money, and time, and career opportunities. I leaned heavily on Husband and my wonderful friends to drag myself through it all, trying to find a way to be awake, to not be in pain, to concentrate long enough to succeed at something. And without those friends, and certainly without Husband, I don’t think I’d have reached the end of this ride (not that I’m necessarily at the end, but I have all the big pieces of the puzzle).
And yet, I can’t regret it, because now I understand the shit that my body and my brain are pulling on me.
I understand it; and I can treat it. I won’t ever make my body or my brain normal – that’s neither achievable nor, in many ways, desirable (although I’d kick Crohn’s Disease out without a second thought). What I can do is find medications for the symptoms that respond to medication, and find work arounds for the symptoms that don’t.
And I still have trouble – I’ll always have some trouble – but it’s better. It’s much better.
It’s left me with a niggling problem though.
I want everyone else who has these problems – all of which can be incredibly difficult to track down and diagnose – to get help as well. I want their lives to get better. That’s a trap. Generally speaking, people need to be left to manage their own medical situation, for so many reasons. There’s nothing more infuriating than the tenth person who has asked if you’ve tried yoga for your genetic musculoskeletal disorder – and you’re lucky if that stops at ten people. People want to help, and it’s a right fucking pain.
No. Multivitamins will not fix my autoimmune disease, thank you very fucking much for your heartfelt advice.
I don’t want to be that person. And there’s a natural tendency, when you’ve just been diagnosed with a problem, and when you have a solution, to see that problem everywhere you look. You’ve been given all these hints and clues, and now your eyes can’t help but find them all over the place. The safest thing to do is to zip your lip.
None of these things that I have – the Crohn’s, the ADHD, the hypermobility syndrome – are rare conditions. ADHD is estimated to occur in 2-8% of the population, and symptomatic forms of hypermobility syndrome could be as high as 10% (for varying degrees of severity), and is especially common in women. The overal incidence of inflammatory bowel disease (Crohn’s Disease and Ulcerative Colitis) in the Australian population is much lower, at an estimated 29.6 per 100,000 people (although that estimate was calculated in a 2010 paper). Which makes it uncommon, not rare.
And a lot of people can have these conditions without realising it. They just know their stomach hurts a lot sometimes for no apparent reason, or their vision goes black when they stand up too fast and they get really tired for no apparent reason, and they keep injuring their back or their ankles, or perhaps that they can’t focus or concentrate and they just keep procrastinating – and they feel so horrible and lazy, because why can’t they do things that seem so easy for everyone else?
And all your test results come back normal and nobody seems to believe you. You start to think it’s all in your head.
As it happens, a lot of common issues actually require some very specific tests.
Here’s the problem.
Apart from Crohn’s Disease – which, if not diagnosed, can legit actually kill you, although forms of CD that severe will usually inspire you to get that checked out anyway – these conditions are not going to cause your actual death.
Undiagnosed, unmanaged and untreated ADHD can make you thoroughly miserable and adrift in your life, feeling like you’re wasting your potential and constantly scrambling to keep up.
Undiagnosed hypermobility syndrome can leave you an exhausted, anxious mess with joint pain and freezing extremities who sometimes might pass out, or who might end up diagnosed with an anxiety disorder you don’t actually have (despite near-constant panic), and a whole laundry list of other weird things that turn up in a multi-systemic condition resulting from a defective family of proteins that is genuinely ubiquitous in the body (I will write a post on these other effects at some point).
Undiagnosed mild Crohn’s Disease is unlikely to kill you, but constant or near-constant or unpredictable abdominal pain is a miserable thing, and I have to say, being hospitalised every year or so for recurring abscesses is no picnic. Crohn’s Disease does also significantly increase your risk of bowel cancer, so it’s something you want to be aware of.
Getting these things picked up and sorted out is no picnic. Getting an adult ADHD diagnosis can be expensive and difficult – there’s still a little stigma in the psychiatric community against adult ADHD, and even more against diagnosing women – so you need to do a good deal of research to find a doctor who is even going to be open to treating you. Very few doctors have any understanding of hypermobility syndrome or the consequences it has on blood pressure, or even the severity of the problems that low blood pressure and orthostatic intolerance can cause – so that slides under the radar, and there are very few specialists that deal with it appropriately.
They are very expensive.
As to Crohn’s Disease? By the time I’d got that diagnosed, I’d had a colonoscopy, a gastroscopy, a CAT scan, an abdominal MRI, three fecal calprotectin tests (one of which came back normal) and a pill cam. The FC tests eventually – eventually – suggested a serious problem. A normal result is less than 50. A definitive result is over 100. I got results of 92, 12 – 12! – and 376. In that order. The pill cam eventually showed my Crohn’s, and also revealed why it was so difficult to find. It was so deep in my small intestine that it was beyond the range of the gastroscopy, and – while severe enough to cause very unpleasant symptoms – it hadn’t caused the sort of scarring and narrowing that would show up in an MRI or CAT scan.
And my story – as I understand it – is not uncommon. A lot of people with more severe symptoms have cryptic Crohn’s Disease that hides away.
Not all of these tests are bulk-billed by Medicare. The specialists certainly aren’t, as a rule.
All up, I’m out of pocket a few grand for diagnosis, testing, consults and so on. Not to mention a few non-PBS medications.
The fact is that – again, except for the Crohn’s – there are ways to cope with and manage hypermobility syndrome and ADHD without a formal diagnosis and prescription medication. People who don’t know they have ADHD often do know that they’re forgetful and easily distracted, and they come up with coping mechanisms. People with hypermobility syndrome might notice they feel better when wearing tighter clothes and doing regular core strengthening exercises, so they do that. They might wear bracing equipment when they work out, because they have “bad knees”. They might take various medications for their anxiety (although they might be a bit less effective if the cause of that anxiety is a defect in collagen and resulting blood pressure and adrenaline issues).
It won’t be worth the time and the money for everyone to look into these things.
But. Maybe it is.
What can I do without being an interfering, condescending, git? Given that I’m pretty sure I have a couple of friends with undiagnosed ADHD, and I can think of five women I know who might have hypermobility syndrome (ranging from “hmm, maybe,” to “oh my fucking god, you have this, I’m not even kidding, get thee hence”), it’s a real problem. I’m fortunate that in most of those cases, I’m close enough to these people to be able to say “soooo, this made me think of you, a bit, so, let me know if I’m being a pain but I thought you might be interested…”
But if I’m not close enough? I can’t do that. It’s neither fair, nor safe. People with chronic illness – even misdiagnosed chronic illness – have enough complicated shit to deal with without having to manage my excitable interest in their condition (unless they’re a close friend, in which case for the most part they’ve already signed up to the “Kate is a biologist and gets excited by weird shit, just roll with it until she shows us another cool picture of an octopus.”).
In those cases, all I can do is what I’m doing now.
I can share my experience. I can write about my symptoms. I can write about the symptoms that I, personally, don’t have, but which occur in other presentations of my conditions. I can share what I know about the diagnostic process. I can be open about medication, and be willing to answer questions.
And, sometimes, when I say “…and then that happens…” and someone blinks and their mouth drops open a bit and their response is, “Huh. So that’s not- that’s a thing? That… oh. Wow. Hm.” Or sometimes, they just laugh at me, and say, “but everyone gets that, that’s normal,” and when I explain that actually, no, not so much, there’s another jaw-drop moment.
Then I can direct their attention to resources, if they’re interested, or leave it alone, if they’re not, and they want to process for a bit and do their own research.
This is the best way I can help, without being a git. To talk about myself, and tell my own story, and make it clear that, if you’re concerned, you can ask me about it.
And to talk about how much fucking better life is when you get decent diagnosis and treatment, all the way from being in less pain right down to feeling less like you’ve been going mad because all your test results were normal and you thought it was all in your head.
Chances are it’s not all in your head.
You deserve to be listened to. You deserve help.