When you’re scared of your own body

Reflections on learning to feel safe(r)

You know that scene in The Holiday when Cameron Diaz, fresh off the plane from LA, is in a cab driving through the perfectly snowy and picturesque English countryside, is told that she’d have to get out and walk if she wants to make it to the cottage she swapped with Kate Winslet because they were both having major “shitty men” issues?

Out of the cab she pops, all perfectly blowdried hair and high heeled boots, dragging a suitcase down a charming little side road, slipping dramatically across the ice.

Yeah, so…I watch that scene from behind a cushion.

What about her poor knees! Surely that’s so dangerous?! She could slip and dislocate something!

I used to have to literally look away from the tv during scenes like this. My very own horror movie that I hadn’t signed up for.

I’d grab my own knees and sharply inhale. There’d be a sinking feeling in my chest, and my heart would start beating fast. I’d make a self-depreciating joke about people with healthy, functioning knees that stay where they’re supposed to…and then the moment would be over, Sebastian would tell me I could come out from behind the cushion, and we’d continue watching the film.

Something similar happens when I’m in the bathroom or kitchen and there’s a small wet patch on the floor and my foot starts to slip. I feel a rising sense of panic and call for help, a pair of boots - anything to make sure that I felt safe.

Now, don’t get me wrong, I am 100% fully aware of how embarrassingly dramatic and unnecessary this sounds.

But why am I scared to be near water? Why do I have such a seemingly-oversized reaction to even seeing someone else slipping on something wet or icy on the bloody television?!

What if I told you that the majority of my knee dislocations happened when I slipped on something wet? A puddle, a booze covered bar floor, the wet floor of the security room at the Holocaust Museum in Paris as I was reaching to put my bag through the scanner…not my finest moment, really.

And then there are, of course, the drier things: a hole in the sand at the beach, a piece of paper on the floor.

What they all have in common is slipping, with my foot going one way and my knee going the other.

And even thinking about slipping, thinking about those past knee dislocations is enough to remind me of that very specific feeling and to make me grab for my knee and feel physically sick.

Which means that with over 20 years of knee-related nonsense, my reaction is in part a subconscious protective reaction based on decades of my knee sliding where it isn’t supposed to go - whether it be the “big dislocations” or the subluxations, pops and incredible pain that I have experienced throughout my life.

Prior to my EDS diagnosis, we called them my “wobbly kneecaps”.

The first recorded incident on my medical record was from the early 90s, and I have to say there’s something weird about growing up with a body that seemingly falls apart at random.

When you experience mysterious pains no-one understands, and when your joints…suddenly decide to go on holiday for who knows what reason, you’re left pushing through and doing the best you can, whilst not having the slightest bloody clue what is happening in your body, or what to do about it.

Besides the pain itself, the fear becomes palpable. Who knows what will be the next thing to cause an issue? What seemingly small thing that others can shrug off in an instant can become dangerous to your body? It seemed like I could a part of my body where I was fine, and then something would happen and it would never go back to “normal” again.

Once I had my diagnosis, and didn’t have the most positive experience with the specialist physiotherapy, I didn’t know what to do. I thought “physiotherapy didn’t work for me”.

I was getting more injured, more fatigued. My joints were sliding out more than ever.

I was always scared to go out in public (a combination of my EDS and the fact that I’m 4 foot 9 and people have a habit of walking into me anyway) and my anxiety levels shot through the roof.

It got to the point where, to my mind, all movement was dangerous. After all, my formative experiences up until that point proved that to be true, I was only getting worse - and from what I had read on the Facebook groups, that seemed like an inevitable future.

Without the help that I clearly needed, I did what I thought was the safest thing of all: I took to my bed and tried to avoid being around anything or anyone that could cause more damage as much as possible.

I was scared all the time. I was scared turning in bed, I was scared cooking, I was scared going out for a walk.

And it’s a vicious cycle, isn’t it? Because from everything I’ve read and everything I now know from my own experience - strengthening and movement are one of the single most important tools I have to manage my EDS.

But pain and injuries can lead to fear, lack of (or inappropriate care) lead to worsening pain and injuries, which leads to frustration and hopelessness, which leads to more fear…and so the cycle continues until we’re left in a position, both physically and mentally, that could have been avoided if only appropriate care were provided.

Which brings us back to my outsize reactions to watching The Holiday.

My brain had learned to subconsciously overcompensate over the years in a bid to protect me from the danger of my own body.

And whilst those mechanisms developed for very legitimate reasons and probably helped me at one point, it got to the point where they weren’t anymore.

In fact, when I was able to get appropriate care, about 50% of the work we did was on making me feel psychologically safe enough to do things, and re-teaching my body that it does, in fact, have the potential to move in a safe (or at least safer) way.

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I know that this is a tricky topic to discuss in the chronic illness community, because fear and “avoidance behaviours” are often thrown at people in a dismissive, negative, and often cruel way. Patients are blamed for their worsening symptoms, for not “doing the work”, and not wanting to try things that they are scared will cause them harm.

Of course they bloody don’t! They’re scared and in pain and the last thing they want or need is to be pushed to do something by a physiotherapist that will cause more issues.

Once again it comes back to a lack of safe, sustainable, appropriate and affordable care and we can not disentangle this conversation from that at any level.

From personal experience, I can say that my fears and concerns were so rarely taken into consideration, and the care was not personalised to an extent to make it beneficial. When I didn’t respond well to medication or I got injured doing an exercise I was forced into, I felt like I hadn’t been listened to, and that I was to blame. This is not ok. It’s counterproductive and leaves so many people at a complete loss, and often on a road to further decline.

With that being said, I also think it’s important to recognise that living with a chronic condition for years and years (and in cases like mine, since childhood) can do things to the way we perceive our bodies and the world around us that we may not even recognise - and it’s unhelpful to deny that this is the case. In fact, it has even impacted how I move without me realising, which I’ll be discussing more in a bit.

It is my contention that there is more than one thing at play here. I would argue that feelings of fear are an entirely normal and natural part of having a health condition that does weird things to your body that so often seem totally random (and are not the reason for these issues being there in the first place!), the effects of which are only amplified by being let down by medical professionals.

But the way that we interact with things like movement can be so tied up with subconscious mechanisms that developed in order to protect us, that it’s important to understand and unravel them as a major part of any intervention that we do.

So today, I wanted to talk about my personal experience of being scared of my own body, what happens when those mechanisms that are there to protect you go a bit too far, and how, with a lot of hard work and support, I’m finally learning to feel safer in my body.