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The Things I Wish I Could Tell My Doctor About Ehlers-Danlos Syndrome

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Over the last few weeks I have come up against the joys of the National Health Service again – the most tricky of these services seeming to be the good old general practitioners. Yes, that’s right, those smiley happy (usually) pointless people that you have to deal with every time your health takes a turn.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

In general, I tend to avoid going. Dealing with Ehlers-Danlos syndrome has taught me a lot – how to grin and bear it, how to put on a smile, and most importantly how to ignore the pain in order to find some way to get on with the life you should be having. Unfortunately, the biggest lesson I have learned along the way is that seeking medical attention is more likely to leave you labeled with unsavory terminology rather then give you any help in dealing with the symptoms that EDS creates. If I could openly talk to a GP who I knew would actually absorb the information, there are a few things I would like to point out to them, and today these have been brought into the forefront of my mind after yet another frustrating appointment.

First and foremost I would like to make it clear that Ehlers Danlos syndrome is a very real illness. It is not the stuff of legends, nor is it something out of a fairy tale. No. Ehlers-Danlos syndrome is an illness caused by faulty connective tissue. As a doctor, I would like to assume this is a conceivable idea, and shouldn’t pose too many issues so far as forming some understanding of what may be affected. Most importantly, I would love to be able to assume that you didn’t get your notes mixed up in med school and come away with the idea that having said faulty connective tissue is not possible, and is in fact something only a hypochondriac would say.

Second, I would like to make it clear that we do not tend to frequent your consulting rooms for fun. Believe it or not, we are people who do have better things to do with our time. Speaking for myself, I can quite safely say that I would much prefer sitting in the pottery studio then waste my life sitting in your waiting room. We live our lives in a lot of pain, and for the most part we tend to get by and get on with things without needing your continual attention. So, when we do turn up, please listen with open ears. Understand that we may turn up with new, worsening or scary symptoms. Listen and try to understand that there are many things that can go wrong when the collagen in your body is faulty, and that these really do need to be kept in mind before making a decision on the cause of things. It may look like a clear-cut diagnosis, but unless you bear in mind that there is a pre-existing medical condition underpinning this, then you are likely to be barking up the wrong tree.

More times then not, we leave your office feeling that seeking help is a futile experience, and for me this has led to years of avoiding your offices at all costs. This is continually reenforced every time you refuse to listen, and pretty much every time it turns out that there was indeed cause for concern years later when I finally find someone who makes the time to investigate things properly.

Thirdly, understand that we are not drug-seeking. You may look at the list of medication and think it to be unsuitable for a “healthy young adult,” but in reality you are not dealing with someone who is the picture of health. You are dealing with people who are in pain, who have stomach issues, urinary issues, depression/anxiety, POTS, joints that sublux or dislocate multiple times a day – to name a few. You are dealing with people who have so many systems in their body affected that it is very difficult to treat in almost any direction you can come at it. Yes, heat patches, stretching and a TENS machine may be of use if your muscles are sore, but they really don’t cut the mustard when your hip refuses to pop back in for days on end. Mindfulness again may help you to calm your head and become mentally stronger, but not every symptom of ours can be controlled with this – I should know, I can tell you just how ineffective it is for intense pain from sitting in a service area balling my eyes out after attempting to use it to enable me to drive for another three hours that day. Sometimes medication has to play a role.

I would love to be free from my tablets, but in reality these keep me at a level of being semi-able to function. They dull some of the pain, they boost my mood, they slow my heart rate – they even help my stomach acid to stay where it should be rather then coming back up to my mouth. They are far from ideal, but they are often preferable, and even necessary.

So before jumping to conclusion that we are entering your office solely to gain access to your prescription pad, please understand that we would jump at the idea of never needing another tablet ever again if there was such a treatment available.

We are ill people with a very complex illness – we are not addicts.

Fourth, you really need to understand that Ehlers-Danlos syndrome is not a “phase” we are going through. This is a genetic condition – and just like every other genetic condition you treat, that means that it is part of how we’re built. We aren’t going to wake up one morning with a body that suddenly remembers how to fix itself – our blueprints are wrong, and we have already been built. These symptoms aren’t simply going to disappear overnight, and many of them will sadly never disappear at all.

For some people (the luckiest of an unlucky bunch), they may not deteriorate too much – but for many of us, it is a syndrome that can cause long-term and severe deterioration in almost every part of the body. Its called deterioration for a reason.

By telling us that we will “get better” or “it will pass,” you are simply reenforcing our understanding that you ignore, diminish and don’t listen to us. You are making it crystal clear that our illnesses are not cause for concern, and therefore making it evident that we are unworthy of treatment. The damage that this can cause is monumental. Not only does it make it harder for us to get treatment, but it can have horrific effects on a patients mental wellbeing.

Lastly, be aware that we know our bodies far better then you ever could. After all – we are living in them. If we come to you for help, it is usually because something isn’t right, and isn’t our normal. You’re medical opinion is only useful if you take the time to hear us when we try to talk to you. You may suspect how we are feeling, but unless you actually take the time to talk with us about our symptoms, then how on earth can you make a decision on what is wrong?

We have bodies that struggle with chronic pain – therefore, if we are saying that something feels different, then it is extremely important that you don’t assume this is just what chronic pain feels like. We know what our pain feels like – we live in it day-in-day-out. If there is a new and severe type of pain, this really does need to be looked into just as you would for any other patient. Just because we have pain does not mean we can’t tell if things go wrong.

It is exhausting to be continually pushing for care, and extremely frightening to be ignored when you know that something isn’t right. We are the experts on our body, and more often then not, we often have to become the experts in our own condition. It would be a much easier ride for those with unusual conditions if doctors could accept, learn and work with us, rather then assuming that they know everything.

They are only human, after all.

Follow this journey on Life on the Stripey Side.

Lead photo by Thinkstock Images

Originally published: December 6, 2016
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