16 Things A Doctor Won’t Tell You When You Are First Diagnosed with EDS: The Ehlers Danlos Series

Ehlers Danlos Syndrome

As it is coming up to my 2 year EDS diagnosis anniversary (if we can even call it that), I thought it would be a good idea to share with you what I have learnt since my initial diagnosis.


  1. EDS is a Part of an Unlucky Dip

An Ehlers Danlos Syndrome diagnosis is actually the start of the chronic illness journey for many. I am not writing this post to be controversial or to undermine the great work doctors do. However, I had no idea how much time I would be spending in hospital to test for other conditions that can be related to EDS.  Since my EDS diagnosis, I have been diagnosed with Mast Cell Activation Disorder, Interstitial Cystitis and Irritable Bowel Syndrome. I also had tests for POTS and need ones for Fibromyalgia, Chrones and Celiac disease. I am not advising if you suspect you have EDS look up all these conditions, but it may help to be aware of them if you are still poorly and may have other underlined problems going on.

  1. You will Still Be Treated Like Your Mental…

You’ve seen your diagnosis in black and white, so people should understand you have Ehlers Danlos Syndrome now – right? Well, in truth is most people, even general practitioner haven’t heard of EDS or simply just still think you are delusional.  Once I had received a private diagnosis a rheumatologist, the NHS still wanted to inspect my body and my mental health consultant still tries to convince me all my physical pain is drawn from emotional pain.  It always good to keep the diagnosis in a safe place, and argue your ground if someone tries to dispute your chronic illness.

  1. EDS can Negatively affect your Mental Health

EDS may of already of started to affect your mental health before your diagnosis but, it can be very upsetting if people are not more understanding when you have been diagnosed. If you think you’re mentally stable, that is great! Although, I am not ashamed to admit EDS has played a big part in my mental health downward spiral. I was unable to do the things I previously loved, had to find new hobbies, new ways of doing things and it really has affected my confidence nearly beyond repair.  I attend free psychiatrist counselling for my EDS at Royal National Orthopaedic Hospital. If you feel like you could do with some more specialist support, it may be worth asking if this option is available at a hospital near you.

  1. Your Pain May get Progressively Worse

Two years ago I had mainly pain on the left side of my body, my bladder and my neck. Now, the pain moves around and I have weak and painful shoulders, knees, wrists and ankles. Once, working an active job as a Waitress, now I can barely walk without wondering if my legs are going to give way.

  1. Is this or isn’t this EDS Thing?

I mean, yes there is the Beighton Scale to get your diagnosis – but what about everything else in your daily life?  Over time you may be able to notice you can do things you either couldn’t do before – or didn’t notice before.  You will be sitting there wondering is this something linked to EDS or just a weird thing my body does.  These things may vary from jaw dislocations, sitting and standing in weird positions, certain types of rashes and bruises etc.

Ehlers Danlos Syndrome

6.Your Sex Life will be Affected

You are super flexible – so other people assume to think this is sexy. Well, we wish haha. Yes, it is true sometimes we can put ourselves in unusual positions – but doctors don’t tell you, that there will probably  be a midriff  leg or hip dislocation and you will be in pain that you might have to stop. Yes, I really mean pain literally days after and you are more prone to UTIS so you have to be gentler – which you S/O may find more boring. Oh and you also may find that you will be sipping caffeine half way through because you are physically exhausted.

  1. There’s not a ‘One Box Fits All’ Approach

Symptoms for people with the same type of EDS can dramatically vary – this makes it difficult to help you manage your condition and symptoms straight away. There are EDS online support groups, which may be helpful but there can be a lot of people arguing because of their own experiences. I am still part of these groups but it is worth bearing in mind and coming up with a plan that works for you. After all you know your body better than anybody else.

  1. Heat Can Temporarily Help Heal Pain

I went to Spain for a couple months at a time and didn’t feel cured but the joint pain was less severe. I am not sure if this has worked for other people but definitely did for me – which may be due to my Vitamin D insufficiency. If going abroad isn’t viable for long periods of time, then my go to items are a hot water bottle, an electric blanket and a bubble bath.

  1. Your Hair Will Start to Thin and Shred

I never have had the most amazing hair but when I was younger but at least I had a frizzball.  Now, I have the choice of spending lots of money of human hair extensions (that look medioka) and be in debt or not have hair at all. When I was first diagnosed with EDS, I knew I was vitamin D insufficiency but didn’t realise it would progress and most my hair would fall out so quick!

  1. Flat Feet should be Taken Care of Early On

I always knew I had flat… a common sign of EDS. However, I wasn’t told this would cause me to walk on the outer part of my feet and I was more susceptible to dislocated and broken ankles and splints would help prevent this.  It took me to break my ankle to know being referred to a foot and ankle specialist an orthotics. If you find you are having problems with your stability walking, you should flag this up to your rheumatologist early on to try and prevent more injuries.


  1. Your ‘Party Tricks’ Cause More Damage

If you have hyper-mobility EDS are flexible you are likely to be able to bend and your body in weird and wonderful ways that shock people. Although, you might not feel pain from this is actually causes more strain on your ligaments, so you might want to hold off on that.

Ehlers Danlos Syndrome

  1. An Elimination Diet isn’t a Miracle Cure

An elimination diet can help relieve some symptoms i.e. gluten free, lactose free and a low histamine diet. However, if you have other associated problems like Mast Cell Activation Disorder or oral food allergy syndrome don’t believe it can solve all your gut issues. I started to consult with an adult nutritionist and keep a journal of my triggers, which may help you too.

  1. Specialists Tend to Assess Individual Body Parts

As EDS, is caused by a collagen defect which can affect the tissue in your entire body – you would think your body is always looked as whole.  However, I have seen numerous specialists who look at each body part in isolation i.e. bladder, heart etc. This can make it very hard for all the joints to be connected up, and cause some specialists to treat you like a drug seeker. To get your body assessed as a whole for pain management, the best place is the Hypermobilty Clinic, London. However, there is an extremely long waiting list for this so it’s best to ask for a referral shortly after seeing your diagnosis. Unless you can afford to go privately, of course.

  1. You Need Special Adjustments for Operations

Have you ever had an operation and wondered why you didn’t go down straight under? Well that’s because there is evidence people with EDS have a resistant to local anaesthetic. Also due to our fragile skin, it is better to be stitched up with butterfly stitches or natural stitches instead of synthetic ones.

  1. A Medical Bracelet Can Help Prevent Suspicion

You may be sat there thinking, EDS is an invisible illness but if you are quite young or look quite young people may think you are prone to domestic abuse. Once, I was sat in a hospital with a friend who lots of people assumed had beaten me up with bruises all over my neck. I frequently get these on my back too or if you are exhausted it can help you get a seat on public transport.


  1.  Request Special Adjustments in Work or Education

Although, the law may give disability living allowance to some people with EDS and not to others – depending on how it affects your life.  In the workplace and law I have found that special adjustments have been made. Examples include: I can have longer to submit assignments with evidence. I am also entitled to dictation software, if I want it to support my studies. In the workplace, I can request an ergonomic keyboard, chair and mouse and they make allowances for my hospital visits.

So there it is guys, I hope my post has enlightened you, in what I wish I knew when I was first diagnosed with Ehlers Danlos Syndrome.

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Can you think of anything you or someone you know with EDS can add to my list? – If so I would love to hear from you.

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  1. I’ve never heard of this disease so don’t know anything about it. That being said, posts like this tend to tell me more about what a person goes through with the disease rather than just the medical explanation, meaning I find this much more informative.


  2. Thank you for sharing your experience and for raising awareness. I have a different rare disease, called mitochondrial disease, but I also have hypermobility and daily join dislocation. It is not fun!


  3. All this and more. My first doctor didn’t even tell me I was diagnosed with it. It took another doctor looking at my records to explain what it was. Much much later I was explained properly by a geneticist, referred by an ER doc.


  4. I never knew about all these symptoms and the problems that this disease creates. It would be really helpful I think to find a good and experienced doctor who will give you all the information you might need. Really useful and helpful article. Hope everything is going better now.


  5. I had never heard about EDS more than the name before, but I am so sorry you’ve had to face all these challenges! I can only imagine what you’ve gone through. At least you have a diagnosis which gives you a direction to turn for answers – I only recently got diagnosed w/a rare genetic mutation that explains why I keep breaking bones that won’t heal, have tissue (bone, cartilage, etc) suddenly and randomly die off in different joints, etc. Having answers is a huge relief and means we can finally address the root cause rather than play whack-a-mole at the symptoms@


  6. Wow so much here I didn’t know about EDS. Glad you got a diagnosis and can move forward from here with knowledge and care. Thanks for raising awareness!


  7. Such an informative article. Thanks for raising awareness about EDS, I wasn’t aware of it before. More power to you!


  8. Oh my, I only had very superficial info about EDS and after reading your post I am way more aware of what it is about! Nobody ever tells you how the everyday life is affected!


  9. This is actually the first time I had heard of this. Although I know people who have had several of the things you talked about here. I will have to check with them if they have heard of this and if they haven’t whether they should check with their doctor.


    1. It is possible for many people to be hypermobile but not get other symptoms like fatigue , photosensitivity , allergies etc but even do two Eds patients with the same type have the exact same symptoms which makes it difficult for doctors to recommend managing tools. Although there is definitely no harm in them going to ask for a referral to a rheumalogist for piece of mind x

      Liked by 1 person

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