Since the age of 12, due to the regularity at which I needed physio or specialists appointments, my family and I have referred to me as “a frequent flyer”. You know, a frequent flyer miles program member. We would joke with reception staff that I needed a membership card, and that perhaps if they couldn’t offer frequent flyer points, I might at least get the 10th visit free. Of course, we were only joking, and trying to make light of the stressful situation of always needing treatment. I learned many lessons during this time of frequent-flying, one of which was the need to balance hyper-vigilance vs. complacency in managing hypermobility conditions.
I was a patient at the same physiotherapy and sports medicine practices for almost 20 years. In that time, I became a very familiar face, name (and phone number) to the staff there. There were many benefits of going to the same place for so many years, familiarity being only one of them. For me, it worked well because it provided me with continuity of care, something I was in desperate need of as a teenager with undiagnosed hypermobility. However, there are also some dangers involved, and we need to be aware of them; they can happen to any of us.
When you’ve seen something or heard something enough times, it becomes a little old. We don’t pay attention to the details like we did in the beginning. We assume that we know it; we assume it hasn’t changed. That, my friends, is where one of the dangers lies: Complacency. By going to see the same health professional for years on end, there is potential to fall into the ‘complacent trap’ of “Oh yes, that sore knee” or “yes, yes, you’re hypermobile”. It’s easy to assume that it is just the “same old, same old”.
I was very fortunate to have a doctor who decided early on that everything needed assessment and potentially investigation because we could not afford to just put it down to my “hypermobility”. That was an incredibly crucial moment in my life, and in the course of my medical history. After years of being a medical mystery, of being told I was making things up, that I was catastrophizing, and that I couldn’t possibly be in that much pain, it was such a relief to hear my doctor say “I believe you, Michelle”. “I believe you, and if it hurts, we will look at it. We will try to find out why, and if nothing shows up, then and only then, will we blame it on your hypermobility”.
By making this statement, my doctor modelled to me the need to not become complacent myself. And that became the most important lesson of all. I have to admit, in my teenage years, there was no risk of that happening. I was hyper-aware and hyper-vigilant. I was still so confused about what was happening in and to my body. It was indeed a mystery, and I thought it was my job to be the detective and monitor what was going on. That way I could feed that information back to the doctors. It took me a good ten years to get to the point of being able to balance hyper-vigilance with complacency.
I wasn’t diagnosed with hEDS until I was 23. That was 13 years of treatment, of focussing on my body and what it could and couldn’t do; what it did right and wrong. I’m pretty sure it wasn’t until after my diagnosis, actually after finishing uni (at 25) that I even had a whiff of complacency regarding my health. Up until then, it wasn’t really an option.
For me, a significant shift in my focus occurred when I was 25 because I was living in a rural village in Tanzania, Africa with no access to reliable health care. At that point in my life, my focus was on the children I was in Tanzania to help, not myself. Sure, I had to manage the day to day stuff, like making sure I wore appropriate shoes, being careful how I lifted up the children, making sure I had a rest in the middle of the day/when I could. But generally speaking, there wasn’t enough space in my head or my heart to think too much about my own health (except when I almost died, twice, that took a bit of processing!). It was such a blessing to have that African experience because I came home an entirely different person. Not only had my experience of volunteering in orphanages for four months given me a greater perspective on life and an appreciation for my life back at home, but it taught me that I could make it four months without my doctors and my physio. It taught me that I could rely on myself, more than I thought I could. It taught me that I didn’t need to focus so hard on my health in order to survive. There was more to life, and more was what I had found.
Unfortunately, because I’m a girl of huge extremes, I went the other way entirely for a time. I hated doing my physio exercises; I avoided doctors and dentists and all things medical. I wasn’t looking after myself; I know that much. To be honest, I was enjoying the freedom from the medical shackles that had pinned me down for more than half my life. The freedom felt good. Except it wasn’t actually freedom, it was denial. It took me a while to come back the other way, and find a happy medium; to find the balance between hyper-vigilance and complacency. But I got there!
Before the life-changing Africa experience, if I had an injury, dislocation, sprain, etc. I would have been calling my doctor in the first 48 hours, or at the very least my physio. Now, I think I have a lot more confidence in my ability to know what’s wrong with my body and how urgent it is (do bear in mind that I am a health professional, and have been trained to know a lot of things about the human body!). My physio and I have come up with a bit of a plan – a plan that works for ME – not the next patient that walks through her doors, not even the next patient with hEDS that walks or rolls in. I’m not going to share my plan because it’s only relevant to me. But I hope that you have a health professional with who you can make an appropriate plan, for when you have injuries.
Regardless of the immediate plan, complacency is still something you’re going to have to deal with. Whether it’s your own complacency, or it’s that of the health professional who has been treating you for a while. Hyper-vigilance is probably something you will also encounter at some point on your journey if you haven’t already.
What can we do to combat them?
When it comes to hyper-vigilance:
- Be alert but not alarmed is a good adage. You want to know when things aren’t right, but you don’t want to become so obsessed with your body that you have no time for anything else. That is not living.
- Write things down that do concern you, so you don’t keep playing them over and over in your head (ruminating)
- Educate yourself with credible information – whether that’s from your doctor, or another source such as Mayo Clinic, the NHS or Australian Government Health Agencies – so that you start to understand what is “normal” and what isn’t.
- Practice mindfulness – this will help you to both get in touch with bodily sensations and help you to observe them without attaching meaning to them.
- Find someone on your health care team who you trust and you feel will support you & stand up for you if needed e.g. your physiotherapist or GP
- Bring your concerns to the awareness of your health professionals. Write them down and take them to your appointments, so you don’t forget what you had to say. (Also when they are in writing, people often take our “concerns” more seriously!) If you need a way of recording this, sign up to our mailing list and receive a free worksheet.
- If necessary, now and then, see someone else in the same practice (if there is someone) to get a fresh set of eyes to look at the situation. Don’t feel like this is “cheating on your health professional” because it’s not. Any good, ethical professional will recognise that a second option or fresh set of eyes is helpful to you. This is not the same as doctor or health professional “shopping” where you keep changing because you don’t like the information you are getting or the particular treatment you’re seeking (because you have decided it’s a good idea). That’s different.
Have you got any other tips for managing hyper-vigilance or complacency?