The complexity of management and self-management of Joint Hypermobility Syndrome

I am a text book case on how not to manage Joint Hypermobility Syndrome. My life has been marked by times where I lacked any support contrasting by time where it has been over medicalised, excessively complicated and many assessments I have had no choice but to undergo was heavy on the scepticism and risk management and low on compassion, knowledge and understanding.

Attempting to educate others has not gone well for me as I tend to come across as dismissive of their input, which to be fair, I mainly am. Trapped in a social-welfare system that for the most part deal with people on the opposite end of the spectrum, the techniques offered have also been the opposite of what I really need. I haven’t felt like I have much wiggle room for effective self-management.

In some ways, the most debilitating aspect of EDS/JHS and its associated symptoms and conditions is lack of knowledge, expertise and understanding of those involved in provided care or support in both my condition and how best to manage it. The severity of symptoms or the level of debilitation is often incorrectly measured by how much external support someone needs. Unfortunately for me, I need help to reach a point where I am capable of self-management and help like that is not available but up to me to pull myself up by my own shoelaces.

In this process I have not been as objective or scientifically accurate as I wish I could have been. When faced with the complexity of having multiple overlapping issues that snowball into a nightmare overnight, I panic. More accurately, usually I can be found running in a mental circle yelling to myself Don’t panic! Don’t panic! You’ll only make it worse. Not my proudest moments. I have caved and accepted inappropriate help as a better alternative over no help at all. I have struggled to be independent to the fullest, but I have failed in that regard. I just cannot make the drastic changed required with no physical, practical or financial support. I have suffered from a chronic case of “just try harder, it won’t kill you”.

But just because I have a condition that doesn’t require extensive medical intervention or supervision, doesn’t make it benign. There is a reason the word “benign” was dropped from the initial “Benign joint hypermobility syndrome”. I have found it to be utterly debilitating.

I have struggled with it, against it, because of it my whole life, from my very first memory. I have been depressed, terrified, suicidal and utterly desolate because I haven’t been able to successfully self-manage and establish a near-normal lifestyle – like much of the medical literature and experts state I should be able to do. This leaves me feeling like a failure.

I wish it didn’t.

There is a gap between the ignorant and the experts. I think I fell straight through it. I do believe that with the use of ergonomic (not adaptive) equipment, appropriate pain management, physiotherapy support (in particular trigger point massage which I have found invaluable) and through establishing a healthy and active lifestyle, I could do more, be more and require little or no additional support to the above. I haven’t been able to manage it for myself.

Many ergonomic choices are also rather expensive and out of my reach. The alternative – living a more ergonomic life on a shoestring budget is incredibly difficult – just talk to anyone who has lived on a low income long-term to unravel all the challenges that comes with not having enough money to make life comfortable. Most of the time, I feel as if I am trying to achieve the impossible with my hands and feet tied behind my back. Maybe if I had started out with access to more resources I wouldn’t have tumbled this far down the rabbit hole that getting out has started to seem like an almost impossibility.

It isn’t easy working your way up from a decade of deconditioning whilst experiencing pain, fatigue, chronic migraine attacks, dizzy spells, digestive issues whilst filled with a sense of dread and hopelessness for ever achieving an end result and having little to no resources to devote to the process.

I know what I need to do and most of the time, it just feels like it is all too much. Using your own resourcefulness to creatively tap into the resources needed is a huge endeavour for someone lying in the bottom of a pit hoping to climb out.

I feel as if life asks too much of me. It asks me to be disciplined, dedicated, motivated and willing to attempt the impossible knowing that in all likelihood, it will remain impossible. Sometimes that all feels like a little too much to deal with on a daily basis.

Then I realise that I don’t have to do it all today. And I don’t have to do any of it alone and I can be resourceful. I can do one thing at a time. Take one step at a time. I don’t have to get it right or do it perfectly. I just have to get my balance back. Walking on a rope is much easier than getting back up after falling down.

This morning I have printed out a copy of the The British Society for Paediatric and Adolescent Rheumatology’s Guidelines for Management of Joint Hypermobility Syndrome in Children and Young People and I think it applies just as much to adults as to children.

The underlying message I found within the management guidelines is that as a result of this being a fairly complicated condition with many symptoms/associated conditions, it is vital to find the middle ground. Offer support, but maintain independence. Bend the rules, don’t break them.

 

Doing nothing result in JHS quickly becoming a severely debilitating condition. I think that is important to understand. Digging heads into the sand and trying to lead a “normal lifestyle” doesn’t work. Without appropriate management, mainly self-management, symptoms rapidly worsen to a point where bouncing back even with expert medical intervention is a big struggle. It may not be life threatening, but it can be extremely debilitating.

On the other end of the spectrum, over medicalizing it has the same effect. Attempting to address symptoms with multiple medical assessments, interventions, medication and treatment whilst prescribing medical aids like splints, crutches, wheelchairs and lots of rest will also have a debilitating effect.

Doing the right physiotherapy in the wrong way (a very common issue due to the proprioception issues in those with JHS) will be painful, potentially lead to injury and definitely won’t help with improvement. Using excessive equipment or worse, relying on others to do significant tasks for you will in the long run hurt rather than help. Sitting, standing still or lying down is as bad as never resting.

EDS/HMS is a condition that requires moderation and balance. It requires precise, expert intervention with appropriate physiotherapy, expert occupational therapy input and most of all a positive and proactive mindset. It requires an attitude of immediately getting back on the horse after falling off. Every day. A challenge, but not quite an impossible one.

If there is one thing I am zealously committed to, its regaining my independence or maybe claiming my independence as I haven’t had much independence my whole life.

Working twice as hard often for half the gain is not an easy way of living, but who wants to be ordinary anyway. Let’s aim for the impossible, the incredible, the extraordinary. What better way to encourage a positive attitude than setting some truly amazing goals. That way, even if you fail, you may just exceed your own expectations and sense of what’s possible along the way.

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  1. Thank you for such an honest and pragmatic post. Lying in the pit, financially broke, physically broken, socially isolated, no friends, no access to what really constitutes management of this disease – all that has been and continues to be my life. I look up, try to reach up, but it is not easy to imagine there’s even something beyond and outside of the edge.

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