Perfectionism vs. Chronic Condition

 In Adapting, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pacing, Self-Care, Thought Management

When I was diagnosed in London by the wonderful Prof. Rodney Grahame, I distinctly remember him saying that hypermobility conditions are striking down young, highly motivated women in their prime. (Enter the perfectionism vs. chronic condition battle!). Whether that was backed up by evidence or not, it was his clinical observations over many, many years of working with people with hypermobility.

And it hit me to the core.

perfectionism vs. chronic condition  

Why? How is that fair?

I think they were his questions, too. He was seeing it day in and day out, young, driven women with a zest for life, coming to his rooms in pain, fatigued, and often significantly disabled. He was seeing with his own eyes young women’s lives being halted in their tracks by this condition we knew so little about at that point (and still!).

It’s something I’ve never forgotten.

I’ve had the pleasure of hearing him speak in professional contexts on multiple occasions and his message was the same. Of course, hypermobility affects men as well, but it’s women who more often present for help. And in my professional experience, it’s women who are usually more significantly affected, most likely due to hormonal differences and the impact on muscle strength & ligament laxity.

I often think having a hypermobility condition has plenty of associated cruelties, but this is possibly the worst! There is nothing like having a motivated, intelligent person with a real passion for something… and then slapping them with a condition, that more or less renders them powerless. As we all know, they are the kind of conditions that steal hopes and chase dreams away. These are ruthless conditions.

I know for myself and many patients I’ve worked with, perfectionism is a trait we highly-motivated people battle against. While once it may have been a driving force, a motivator and something that helped us achieve high standards – when you feel trapped in a body that doesn’t let you do what you want to d, it’s a captor, not a comrade. It’s something we now battle against, not alongside. It’s not in our armour now; it’s part of the shield we wage war against.

Because a person with perfectionistic traits, living in a body that doesn’t behave, is living a nightmare. It’s like trying to run and realising your feet are tied together. Having goals, career aspirations, or even simply a daily to-do list becomes a battleground: perfection vs. chronic condition.

For me, that creates a perpetual occurrence of “tug-of-war” between looking after my health and my body’s needs and getting done what my heart & mind want to do. What I know my mind is capable of doing!

I’ve come a long way towards accepting that I can’t do things perfectly AND stay well. I wouldn’t say I’m in perfectionist-recovery yet, but I am much closer than I’ve ever been. I have learned a lot in the last few decades of living with hypermobility and managing my perfectionistic tendencies. That includes these personal lessons:

  • Sometimes near enough HAS to be good enough (especially when it comes to university assignments)
  • P’s really do equal degrees (getting a Pass is OK, you don’t have to aim for the high distinction)
  • Pacing activities helps to get closer to my preconceived standard of achievement
  • Never leave things to the last minute! Ever! Whether that’s an assignment, report or packing to go away…. Ever!
  • Because…. Stress = body meltdown territory
  • Mistakes are how we learn
  • You can’t get everything right all of the time
  • Little bits of work often makes for a happier body that’s more likely to go the distance
  • Asking oneself: Would you hold your own child (imaginary or otherwise) to the standards you hold yourself?
  • Asking oneself: What’s the worst thing that can happen?
  • My health is more important than anything else
  • It’s OK to quit halfway through if that’s what’s best for your health
  • One big change at a time
  • One big challenge or task at a time (e.g. I want to do EVERYTHING but I can only do one or 2 big things at a time, and do them well)

You know what? It’s still possible to achieve things to an acceptable standard when living with a hypermobility condition. I know hundreds of men and women who are a testament to that. Whether it’s finishing a degree, working casually, part time or full time, travelling overseas or interstate, volunteering, becoming a mum or a dad…. anything! Most things are possible to some degree with some planning, modifications or adaptations, support and self-awareness.

If there is something you’re desperate to achieve but you don’t know how to make it happen, an occupational therapy appointment might be helpful – OT’s are trained to analyse people, tasks and environments to help make things happen!

Share with us…. What’s one thing you have achieved despite your condition? Or what’s one thing you really want to find a way to achieve?

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  • Liz Harvie

    This really resonates!! Lovely piece xx

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