To give you a bit of history on me. I am Morgan, a 24 years old Business Student at Oxford Brookes University diagnosed with Ehlers Danlos syndrome III at 23.
Before, we start you may want a brief overview of EDS.
EDS’s are a group of rare inherited conditions that make connective tissue weaker*.
* In some instances, EDS can occur in someone without being inherited. Connective tissue is important to support skin, ligaments, blood vessels and internal organs. There are different types of the condition I will explore in another post. However, all types of EDS are affected by weak connective tissue and loose joints.
Unbeknown to me, my journey to illness began in the womb. Many ask me when EDS will end. The response is morbid. The truth is EDS will end when I die because it is incurable.
If you are one of the rare ones who has heard of EDS, you are probably wondering why I am writing this post. I can’t lie, I do worry each second I will dislocate my wrists or fingers. Yet, I still write. Typically, my posts will not be this long. I just wanted to be completely honest with you from the get go.
“Although, I am disabled I am not EDS – it is just a huge part of me”.
It is not unusual for people to see an illness before they see a person. With EDS, its the opposite. You are only ever likely to see the illness if you know the sufferer well.. because on the surface it’s invisible.
“People don’t understand when I can’t do daily tasks”.
Due to the lack of awareness of it people have the wrong misconception that I am extremely lazy – even I believed this for a long time before the diagnosis.
“Unlike many other suffers of EDS, during secondary school I never knew I was different”.
I made every excuse to get out of P.E because I was in pain but it did not work. I was told I was gifted at gymnastics, whilst I flew into the splits and was doing cartwheels across the floor. I experienced subluxations and dislocations but I thought this was normal. Instead of speaking up about my pain, I turned my attention to being naughty. I got myself excluded more times than I can remember. Teachers thought I was attention seeking but really my fatigue was so bad, I just wanted to sleep.
“I did not have a functioning life for many years“.
I scraped my GCSES but did not care because I aspired to be an artist. I enrolled in college when I was 16 and gain when I was 19 and dropped out both times. I preferred to spend my time drinking alcohol and taking drugs to relax my body.
This put I in a downward spiral because when the substances wore off the pain heightened. As a perfectionist, I realized art was not the right career path for me and kept it as a rare hobby.
It became more apparent my body was weak when I coughed so hard I moved a disc in my back and landed myself into hospital. Despite this, for many years GPS would not accept I was in physical pain.
” Are you sure you are eating your 5 a day?” the doctors asked.
I was sent to see CPNS, complex needs and CAMHS who described me as ‘mentally troubled’. The hardest part of my journey is my parents were not completely convinced of my pain either. If I dare mentioned that four letter word, they would say ‘Here she goes again, she is having a Morgan Moment’ – alluding an impulse of craziness.
“I felt like I had no one and became suicidal”.
Going to the doctors and hospitals were weekly chores. I was always poorly yet, no one could find anything wrong with me. I thought perhaps after all this time the doctors were right and it was in my head. So I attended Complex Needs, High Wycombe where I spent time with mentally ill patients . It was there I realized I was not making up my pain. Me and the other patients did not share any symptoms in common – yet I did not want to live another second suffering.
From then to now…
From time to time I still feel suicidal, but I have come a long way since I was 17. I enrolled into college again when I was 21 to do Business and completed the course. I drink alcohol occasionally but I do not take illegal drugs anymore. Don’t get me wrong, the temptation is still there but I am trying to live a healthier life. My diagnosis has made this easier, with the support from my family and friends.
“By my own admission, socially I am unreliable”.
A lot of people stopped wanting to be my friend.I never know if I am going to have enough energy to see my friends. Going out for a meal, or to the cinema takes me to the point of physical exhaustion.
I started University 5 years late compared to everyone else because I mentally and physically would not have coped. Due to low blood pressure I spend a lot of time in bed. I was also diagnosed with Dyslexia, Dyspraxia, photo-sensitivity and a vitamin D deficiency. I was told the course would be too difficult for me to succeed and to think of a vocational alternative. Through blood, sweat and tears I managed to prove everyone wrong and pass the first year.
“Allergies, Intolerances and Me”…
I was born lactose intolerant but after a few years I was given the green light to drink milk again. In hindsight, whether the intolerance ever went away, I am not sure. I developed OCD because each time I ate I would be sick or have the shits. I was uncomfortable food caused me pain but I liked the fact I was super thin.
“ I was often mistaken for being anorexic“.
When I was 21 years old, I went into severe anaphylaxis. Shortly, after an allergy prick test confirmed I had developed an allergy to nuts and gluten. The test also showed I was lactose intolerant.
In my head – I was a freak. I had never met anyone else with multiple food allergies.
“Changing the way I ate was the hardest thing I have ever done”.
I am in love with sugar and I can’t really cook that well.. Living off processed TV dinners and comfort food was my safe haven. The task to change my diet, was almost impossible for me. Doctors became concerned I would die.
I began to see an Adult Nutritionist for months religiously, who was my rock. Without her, I would not be here writing this today.
Share the Love
I would love if you supported me and followed/ liked my new Facebook page.
I do not know if this blog will be a success or not- but I need a hobby for all the hours I spend ill in bed. I really want to use this space and start up a YouTube channel to discuss content on mine and other peoples conditions to raise awareness.
I also want to provide support to anyone who feels they are alone.
Thanks for meeting me.