The Mighty Logo

16 Things I Wish I Knew After My EDS Diagnosis

The most helpful emails in health
Browse our free newsletters

After living with Ehlers-Danlos syndrome (EDS) for nearly two years, I wanted to share what I have learned since my initial diagnosis.

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

1. Ehlers Danlos Syndrome 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 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, Crohn’s and celiac disease. If you suspect you have EDS, I am not advising you to look up all these conditions, but it may help to be aware of them if you think you may have other underlying problems going on.

2. You may still be treated like you’re “mentally unwell.”

You’ve seen your diagnosis in black and white, so people should understand you have Ehlers-Danlos syndrome now — right? Well, in truth, most people — even general practitioners — haven’t heard of EDS or simply might still think you are delusional. Once I had received a private diagnosis, a rheumatologist and 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’s always good to keep the diagnosis in a safe place, and argue your ground if someone tries to dispute your chronic illness.

3. EDS can negatively affect your mental health.

EDS may have already 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! However, I am not ashamed to admit EDS has played a big part in my mental health. I was unable to do the things I previously loved, had to find new hobbies and new ways of doing things, and it really has affected my confidence, nearly beyond repair. I attend free psychiatrist counseling for my EDS at Royal National Orthopedic Hospital. If you feel like you could do with some more support, it may be worth asking if this option is available at a hospital near you.

4. Your pain may get progressively worse.

Two years ago, I mainly had 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 I was working an active job as a waitress; now I can barely walk without wondering if my legs are going to give way.

5. Is this or isn’t this an “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 if this is something linked to EDS or just a “weird thing” your body does. These things may vary from jaw dislocations, sitting and standing in weird positions, certain types of rashes and bruises etc.

6. Your sex life might be affected.

You are super flexible — so other people might assume this is sexy. Well, we wish. 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 so much pain that you might have to stop. Yes, I really mean pain literally days after and you are likely to be more prone to UTIs, so you have to be gentler. You also may find that you will be sipping caffeine half way through because you are physically exhausted.

7. There’s not a “one box fits all” approach.

Symptoms for people with the same type of EDS can vary dramatically — 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.

8. Heat can temporarily help heal pain.

I went to Spain for a couple months at a time and while I didn’t feel “cured,” the joint pain was less severe. I am not sure if this has worked for other people, but it definitely did for me — which may be due to my vitamin D deficiency. 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.

9. Your hair might start to thin and shred.

I never have had the most amazing hair when I was younger, but at least I had a frizz ball. Now, I have the choice of spending lots of money on human hair extensions (and be in debt), or not have hair at all. When I was first diagnosed with EDS, I knew I had a vitamin D deficiency, but didn’t realize it would progress and most of my hair would fall out so quickly.

10. Flat feet should be taken care of early on.

I always knew I had flat feet, which is 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’d be more susceptible to dislocated and broken ankles. Nor was I told that splints would help prevent this. If you find you are having problems with feeling stable while walking, you should flag this to your rheumatologist early on to try and prevent more injuries.

11. Your “party tricks” can cause more damage.

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

12. 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.

13. 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 at as a 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, and cause some specialists to treat you like a drug seeker. To get your body assessed as a whole for pain management, I recommend the Hypermobilty Clinic in London (if you’re near). However, there is an extremely long waiting list for this so it’s best to ask for a referral shortly after seeing your diagnosis.

14. You might 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 anesthetic. Also, due to our fragile skin, it is better to be stitched up with butterfly stitches or natural stitches instead of synthetic ones.

15. A medical bracelet can help prevent suspicion.

You may be sitting 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 sitting in a hospital with a friend who lots of people assumed had beaten me up with bruises all over my neck. A medical bracelet can also help if you are exhausted, since it can help you get a seat on public transport.

16. Try to request special adjustments in work or education.

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 within the 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.

I hope this has helped provide more information — information I wish I knew when I was first diagnosed with Ehlers-Danlos syndrome.

What information do you wish you knew when you were first diagnosed with Ehlers-Danlos syndrome? Let us know in the comments below.

Originally published: August 15, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home