Ehler’s Danlos-Syndrome; 15 years 5 lessons

What I wish I had known sooner and what I want you to know!

Battle, frustration, hopelessness, isolation, belittled, ignored and patronised….just a few of the words to describe my last 15 years with EDS. I want to share with you my experience of diagnosis and 5 key lessons I have learnt which I hope can help you through the struggle!

Lesson 1. You know your body best.

For me, my hEDS shows up mainly as severe dysfunction of my digestive system. This all began at age 15, when everything started slowing down. The doctors labelled me with so many other things; IBS, depression, anxiety, but there was something within me screaming that none of these things were right. Every doctor ended up saying; “ there is nothing more we can do”. Why were doctors so quick to give up on me?

Over this time, I documented my symptoms, flare ups, what worked and what didn’t. This gave me the evidence and confidence to question any approaches or treatments I didn’t feel comfortable with.

My message to you; you know your body better than anyone so back yourself if something doesn’t feel right. Keep a record of your symptoms, flare ups, medication etc. as this will give you evidence to share with doctors if they suggest a label, treatment or medication which you have concerns over.

Lesson 2. Support from loved ones will keep you fighting

Who was there to pick me up every time? My parents. They had my back, didn’t take no for an answer and fought my corner time after time.

My message to you; sharing with your loved ones is essential, but they can often feel powerless to help. Whilst sharing your feelings also tell them what you need from them.

“Mum/dad, I’m really struggling today with X, but what I really need from you is Y”.

Lesson 3. Be kind to yourself if other problems arise

Unfortunately, at 19 years old, I developed bulimia and anorexia whilst still having no idea what was going on with my digestion. This period was met with so much blame, self-loathing and isolation. I remember sitting on my bed one Friday night and I just broke down. I had hit rock bottom and was thinking; “is this how my life is going to be now?”

My message to you; diagnosis can take such a long time and even with all the strength in the world it can have an impact on other areas of your life. That is ok. When things feel too much I always ask myself:

“How am I feeling today, what is causing me the most distress?”

“What 1 thing can I do right now to help me with X?”.

Lesson 4. The wrong doctor may be the right doctor

I finally got diagnosed with hEDS at 26 years old. The funny thing was, I was diagnosed by a Gastroenterologist in London, whom I had seen 5 years earlier. When I moved to Sydney last year all my fears came flooding back; “how will I find the right care?” After seeing over 10 doctors I finally found the right specialist and support team.

My message to you; I have found the right support twice over by seeing the wrong doctors! Whoever couldn’t help may be a vital link to connect you with the one who can. Also advances in medical research are happening all the time, so, like in my case, re-visiting a doctor years later may have a completely different outcome.

Lesson 5. Own your vulnerability.

Even with the right diagnosis and right support, I still struggle on a daily basis. I used to feel so guilty when I would have to cancel on friends and plans.

My message to you; you are number 1 priority so you must listen to your body and be honest with yourself and others. Sharing what is truly going on will be met with much more understanding than if you were to make an excuse (what I used to do). Now I know this, I will always let people know what is going on:

“I am really sorry but I am having such a tough day with my EDS so I will have to give this one a miss”.

I believe there is always something we can take from the hardest times in our lives. The way I look at my EDS journey now is; ‘if this had to happen for me to learn something vital from it what would it be?’ There have been 5 key lessons, which I wanted to share to help anyone else struggling:

1. You know your body best

2. Support from loved ones will keep you fighting

3. Be kind to yourself if other problems arise

4. The wrong doctor may be the right doctor

5. Own your vulnerability

These 5 lessons still help me to cope with the difficult days and keep positive. I hope that with more of us sharing our stories and experiences to raise awareness, plus the medical advances happening around us we will begin to be listened to, understood and supported more and more.

What have you learnt along the way in your journey?


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