How My Life Has Changed Since My Ehlers-Danlos Diagnosis

Hi I’m 15 years old and I have hypermobile Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), Von Willebrand disease, cervical cranial instability and gastrointestinal issues, along with a lot of other comorbidities.

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

Here is my view and my opinion on the conditions and living with them.

You look at me and there’s only one thing you see: a happy, trouble-free 15-year-old. But that’s only what I allow you to see. You’ll never see what is going on in my head.

My life changed two years ago in an ordinary hospital in an ordinary country. But since then my life has been anything but ordinary, and I see the world in a totally different way – and people too. I see the little things you would never notice until you’ve been exposed to them yourself.

There are two types of pain: the one that hurts you and the one that changes you. I experience both on a daily basis.

Every day is a lottery and, like the real thing, nine times out of 10 you lose. One day you will be confined to your bed in unbearable pain and the next you can be out walking, feeling great and enjoying life.

But it’s like a loan – you always have to pay it back, whether through unbearable pain or complete exhaustion, and mostly it’s both.

Going to the doctor or physiotherapist is like saying you’re going to clean your room today…and we all know that never happens. (You eventually do it under duress.)

I hate when people ask how I’m feeling every 10 minutes, as if I’m suddenly going to jump out of my wheelchair and do the salsa.

When I tell someone I’m in pain 24/7 they never believe me. I just get so angry and want to ask, “Why the hell would I make this up?”

Some people say that those with chronic illnesses are just attention-seekers, but in all honesty that’s the last thing we want. We are already singled out for being different; why would we want to have all eyes on us?

It’s so hard to try and explain to people that you can’t do normal things because you risk hurting yourself. That something as simple as brushing your teeth can cause an unbelievable amount of pain.

Because it’s invisible, EDS is pretty much unheard of, and that is the most frustrating aspect of it. Because the doctors here have very little knowledge of my condition, my mum and I have had to travel to London many times over the past year for diagnosis and treatment.

Because of all of the pain, frustration and exhaustion it’s quite hard to stay positive, and I will admit it got to be too much to handle and overwhelmed me so much that I now struggle with severe anxiety which is difficult to control.

I have been asked whether I would go back and get rid of my condition if I could. My answer is no. This may come as a surprise, but honestly I wouldn’t change a thing (well, maybe the unknowledgeable doctors) because if I didn’t have this condition I wouldn’t have met so many amazing people.

It has also brought me a lot closer to my family and friends. It really shows you who you can count on to be there for you.

I see the world in a whole new light.

When I was first got diagnosed I was admitted to the hospital because I couldn’t walk from the intense pain in my knees. The very first thing my doctor wanted to do was send me to a psychiatrist! He finally sent me for an MRI and, surprise surprise, I had damage to both knees. I felt oddly relieved to know it wasn’t in my head, that there was a reason for my pain.

An orthopedic surgeon was brought down to look at my scans and came to talk to my mum and I. She explained what was going on. I asked the most important question that I needed the answer to. I asked, “Will I be able to walk again without the pain?” She made no eye contact and said, “I’m sorry, but I can’t tell you for sure. There is nothing more we can do.”

I burst into tears and curled up into my mum’s arms. We left the hospital that day. Within two months, after a lot of physiotherapy and determination, I was out of my wheelchair.

Since my diagnosis I haven’t been the same. It has changed me so much. Besides my knowledge of medication (which no person my age should need to have!), I’m also much more aware of how people behave around me and how they react to me, whereas before I wouldn’t have noticed as I would have been moving on to do something else. Funny, the things you notice when you aren’t able to move.

EDS is a horrible condition and should not be dealt with in silence. Please spread awareness about it and support all of us in our fight for awareness and treatment in Ireland.

Thanks so much for reading,

C.M.

Thinkstock photo via Grandfailure.