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10 Things I'd Tell My 10-Year-Old Self About Ehlers-Danlos Syndrome


I have recently turned 19 and I have had my share of experiences, both good and bad. However, something many people will never experience in their entire life is 10 years of severe chronic illness. I have “achieved” this by 19 years old.

I have spent over half my life with numerous chronic conditions – primarily hypermobile Ehlers-Danlos syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and interstitial cystitis. What would you have told yourself at the start of your chronic illness journey if you could have?

Here are 10 things I wish I could have told myself as a child – before I had any idea of the stress, pain and medical complications I was going to face by the time I reached the end of my teenage years.

1. Listen to your body. It is smarter than you’ll ever be. It knows what it needs; you just have to listen for the signs and learn what they are.

2. You may never fully recover, but you will get better. Doctors will promise you many things and give you many labels before finally realizing that everything is connected via a genetic condition called Ehlers-Danlos syndrome. It basically means that the “glue” that holds your body together is “watery.”

3. You will go through unimaginable pain. Physically and emotionally. But you will survive every single time. Nothing is permanent, not even your pain. It will pass.

4. You will have to fight for your education. Realize your health (both physical and emotional) comes first and foremost, followed by your education. Looking after yourself isn’t selfish.

5. Do what makes you happy as much as possible. When you’re too ill to open your eyes, sit up or even talk, then listen to music. It will get you through. Continue learning despite everything. Watch movies, binge-watch TV shows, continue drawing, learn to sew and embroider or whatever sparks your interest. It will keep your brain busy. Crafts act as physiotherapy for your hands, and you are learning a skill at the same time.

6. You will lose many friends. You will make many friends too, though! It may take a while to realize this but true friends will stick by you no matter what, for years to come.

7. Possibly one of my hardest lessons… Eat like you love yourself. Let yourself sleep or rest without guilt. Treat yourself like you love yourself. Exercise when you feel able. Treat yourself with respect. Even though it causes you pain, your body is your temple.

8. Your body will make you feel like it has destroyed who you are. Your body will turn against itself and attack itself. It can, and will, damage your muscles, memory and even do damage to your organs. Although the human body is capable of experiencing huge damage and trauma, it can also heal itself miraculously. I promise.

9. Treat every day and every opportunity as if you have limited time. Make sure you say yes to anything that you would regret not doing. Because the time will come when you can’t get out of bed and you can’t do what your soul aches for – and the last thing you need during those times is to regret not doing what you could’ve done in the past.

10. Finding out that you will never, ever recover will break your heart. You will sob, cry and beg to a higher power you don’t believe in. You will be angry. But you will get through it. You will realize that just because you won’t recover doesn’t mean you won’t heal or go through the process of recovery. You will soon discover how much your body has healed itself – how much it has helped you and supported you. You will still experience teenage years, the drama, the mistakes, the freedom.

You will achieve things you never thought possible and learn to admire and respect your body as it is. You will learn that you simply share your life with your condition – it does not consume who you are as an individual. You are about to face some of the worst things someone can go through, mixed with teenage drama and growing up, but you will get through it and genuinely come out stronger, I promise.

Lots of love,

Your 19-year-old self

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Thinkstock photo via petrenkod.


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