In 2014 a documentary about Ehlers Danlos syndrome, Issues with my Tissues, was released. The 48 minute film chronicles the journey of Lara Bloom, Chief Operations Officer for Ehlers Danlos Support in the UK, as she trains for (and does!) the London Marathon.
First off, I have to hand it to Lara. She does a great job showcasing the many facets of life with Ehlers Danlos Syndrome by sharing her story as well as the stories, challenges, and fears of others. She weaves in medical interviews and facts, helping anyone who watches to learn about EDS. And she does so with humanity and a true sense of “keeping it real”.
I also have to salute her. Finishing a marathon – whether you run, walk or crawl over the line – is a huge accomplishment. I know I will never forget the feeling of triumph when I crossed my marathon finish line in 2004. I’m sure she feels the same.
What is EDS?
EDS – Ehlers Danlos Syndrome is – in layman’s terms – a host of problems all stemming from flawed connective tissues. It is an invisible condition – those diagnosed may look fine on the outside, because everything that happens with EDS is triggered by our internal tissues.
As Professor Rodney Grahame explains in the film, EDS is caused by a genetic flaw in the body’s collagen which alters the collagen protein structure and leads to weakening of all connective tissues. Connective tissues being our ligaments, skin, tendons and bones, and depending on your type of EDS and which collagen protein is involved, this can extend into problems with veins, the stomach, the bladder, the uterus, the autonomic nervous system and even into the heart through valve function… And let’s not forget pain. Chronic pain and fatigue are “normal” for people with EDS.
I was officially diagnosed with hypermobility type EDS in summer 2007, after I had rotationally dislocated my elbow. This followed a host of severe joint dislocations as I was growing up. And the more I have learned about EDS, the more I see that it truly is a systemic issue that impacts my WHOLE BODY. Difficulty in gaining muscle mass? Typical of a person with EDS. Easy to bruise? Yep, EDS. Scars that heal widely, that seem to be pulled apart? EDS. Episodes of passing out in my youth (and still prone to severe light headed episodes)? You got it. EDS.
How About the Film?
Well, here’s the rub. I think the film educates well. It tells a lot of stories. It has compassion and emotion. It said many things that resonated with me.
But on balance it rubbed me the wrong way for a number of reasons…
1. There is No One Rule
I think the film is riddled with inconsistent messages. For example, Lara says at the outset:
“How are we all the same, but so different?”
So why on earth would she go on to state at the end of the film, categorically, that those diagnosed with EDS should not do a marathon?
She misses a key lesson – that because we are all different, we should do what is right for us.
And she misses the opportunity to use her experience to show us how to do this – how to discover what is right for us.
Do we learn what is right for us by giving up dreams and goals? No!
We learn what is right for us by starting slowly. By setting our expectations correctly. By having a great support structure behind us to help us to decipher the unfamiliar messages we may experience when asking our bodies to do new things, or to do more of familiar things.
And we adapt.
Don’t give up your big dream just because someone – be it a doctor or a documentary story teller – tells you not to do it. Pursue your dream smartly and systematically, and above all – learn from what you are experiencing and adapt your dream according to what is right for you.
2. Listen to Your Body
Lara is not the first EDS person to do a marathon. She is certainly not the only EDS person to do a marathon. And each of those active EDSers will tell anyone who listens that learning how to listen to their body has been critical in doing what they do.
Now, it is SO VERY EASY to say “listen to your body”. Even Lara says that this is her approach. But I think she failed to heed these words, and she failed to leave us with a better understanding of how this can actually be done.
No doubt it is tough to listen to a body that does not give signals in a “normal” way. But her doctor gets it so right in the advice on the film:
“Most people who get into trouble do so from unaccustomed physical exercise.”
So, it seems obvious then. If you are doing your first ever walk of a distance (be it a mile, or 10 miles) you need to expect that you will start to feel things that you have not felt before. Are those things to be expected? Are they normal? Almost impossible to say if you have a condition like EDS.
But what you can do is take time. Build up to the effort. Do complementary work to enable you to do it. And by taking time you can learn what you body is saying. You can begin to learn HOW to listen. You learn what this phrase means, and you will say it, you will live “listening to your body.”
Based on my own experiences walking a marathon, and with the benefit of hindsight to help me, I can say that walking is not unlike any other sport. You have to train – and cross train. If you walk, you should be strengthening the muscles so that the muscles do not fatigue from new efforts so quickly, so that muscles can do their jobs. You should take on board self care – muscle releasing massages are a huge relief when you do new things. And don’t forget food! A focus on good healthy eating to make sure your body is in top form helps with recovering from exercise, helps to feel better and bounce back faster.
3. When You Fight Yourself, You Always Lose
“I push through the pain.” “At what point do I give in?”
When you view achieving a goal as going to battle, a “do it or give in” binary choice, you miss the best part of the goal. You miss the opportunity to CHANGE YOUR LIFE. You miss all the learning, the positive life enhancing lessons, that you can take from the process of REACHING TOWARD A GOAL. And you set yourself up to fight yourself.
When the goal is all important – the sole focus – you implicitly have chosen to push yourself no matter the harm because the goal is more important than the journey.
And that’s the thing. When it comes to healthy living, it is not about the goal. You don’t just suddenly wake up and say “A HA! I have arrived! I have achieved HEALTHY LIVING!” Nope. Healthy living is about choosing a path. Some days you stay on course. Some days you go off course. But it’s the path that matters.
When you see a goal as being more about stepping onto a path rather than arriving at a destination, I truly believe that you win, no matter what the outcome. You stop fighting yourself, and you open the door to self acceptance and self love.
When it’s you versus you, you never win.
4. What About The Upsides?
OK I get it. This is a film about EDS and raising awareness about all that EDS entails. And a huge part of that is explaining the pain and suffering we can experience.
But seriously. I found myself struggling to find the upside.
Anyone who knows me knows that I am a glass half full person. And I struggled to find the half full in this portrayal. Yes, Lara achieved her goal. Yes, she captured what her experiences managing EDS while training for and doing a marathon. Yes, she did a tremendous job educating. And she got the medal.
But she did not share her personal upsides, at least not in a way that stuck with me. Maybe she couldn’t find them? Maybe she found them and talked about them, but I just don’t remember them, they got lost for me. If there were no upsides, it is surprising! What a lost opportunity!
I did my walking marathon before I knew I had EDS. I signed up before I knew I had CMT (and completed it with my diagnosis in hand). It was hard. It was painful. I didn’t realise why my body was reacting differently than my training partners. But if there was one thing that I learned through the process, it is that when you set a goal you make a plan, and when you dedicate yourself to your plan (not just words but actions!), you put in the work, and in doing so you can not only reach for but create the foundation to achieve big goals. The process of doing a marathon – not the finish line but the whole six months beforehand – changed my mindset and changed my LIFE completely.
It hasn’t all been unicorns and rainbows. I have had to learn and I have had to adapt. I have cried as I had to change course and shift dreams when my body said “no”. I have been frustrated when I haven’t been able to see or feel improvement. I have been jealous of plain old “normal” people who don’t use their gift – their gift of a healthy body – when I would give anything to be ABLE. But all those emotions have come ALONG WITH a real discovery of who I am. I have grown self belief that I never knew I had, that I would have never found if I had just sat around, wrapped in cotton wool and believing what I was told – that I COULD NOT and I SHOULD NOT do such a thing.
Remember. It doesn’t have to be “a marathon” – your marathon is whatever you make it. The point is – choose your goal, and find the joy in the process (even if the process can be painful).
That is the missing upside I wished had featured more.
Would I Recommend The Film, After All of This?
Yes. Yes I would. I think it is a fascinating window into what it takes to reach high and achieve unthinkable things. I think it educates well about EDS and its many hidden features. And I learned new things too, like how Michael Jackson probably had EDS and the chronic pain associated with it was probably the root reason for his untimely death. And, maybe, you’ll find something that resonates with you.
Expect to be awed by Lara’s resolve, determination and strength of character. But manage your expectations (of seeing more than that) carefully.