More Spoons Please ? Ehlers-Danlos Syndrome: Caitlin’s Story
It was June 2016 - I was 16 years old, every Monday and Saturday I would go to the studio and have dance lessons. Whilst I was preparing for my first ever solo, I thought I had injured myself during one of the steps. I felt an intense pain in my right hip and fell to the floor.
From that day forward, my life changed forever...
After months of myself and my mum pleading with doctors to start investigations on my hip pain, instead of just sending me to several different physios, I got referred to one of the leading hip specialists in my area.
It was there that I finally received a diagnosis.
“Caitlin, we have looked at your MRI scans and CT scans and can confirm that you have Right acetabula hip dysplasia, A tear in your bursa and an extremely weak PSOAS muscle”
Okay, I am not going crazy, there really is something wrong and the amount of pain I had been in from being 14 years old is real. It isn’t all in my head!
I underwent a course of more specialised physio to try and strengthen my PSOAS muscle and glutes; to keep my hip from giving way. I had multiple steroid injections into my hip to help ease the pain which unfortunately didn’t work and I could have no more than two anyway.
I was 17 by the time this had happened, the Dr advised It was likely that I would need surgery on it. However, they’d like to wait until I was 21 as my body would continue to grow until I was around that age. After two courses of injections, I was prescribed codeine and sent on my way.
I’m now 21. I am nervous because the surgery has always been in the back of my mind and now I’m old enough to get it.
There hasn’t been any further medical input in this almost 5 year gap, I have just learnt how to highly mask my chronic pain whilst dealing with it deteriorating year by year. I speak to my primary Dr again, to which I was advised that they don’t want to go ahead with the surgery to fix my hip dysplasia, instead I should just continue taking the opioids and have regular physio.
Speechless.
I had shut down completely after hearing this news, so again, I carried on with life like nothing was going on. When in reality as soon as I would get home from work I would cry.
The pain would prevent me from walking up my stairs so I would often sleep on my sofa. I would get stuck in the bath and have to call friends and family to come over and assist me on getting out safely. I would continue taking the pain medication which at this point had stopped making much of a difference as my pain had got increasingly worse, however, no one wanted to listen. Or help explore my other complaints of chronic widespread pain.
February 2023 - 24 years old.
By this point in my journey, I was working a corporate role and had worked my way up the ladder. I was managing a large team of new starters, I was running my own home, and distracting myself by putting every ounce of energy I had into my role at work.
My mental health had taken a huge beating during the years due to me fighting an internal battle with the debilitating pain and symptoms. Needing to mask them because I wanted to be as successful as possible; maybe that would make up for the fact that I’m struggling so much...
I had no life, I would work sleep repeat, on my days off I would be glued to my bed and I would sleep the entire weekend away.
My shifts had no real pattern so I couldn’t plan days of sleep in to recharge and try and restock the limited ‘spoons’ I had. I was cancelling plans, I wasn’t seeing my friends or family because I simply couldn’t find the energy within myself to mask during days off.
Even having a conversation was too exhausting. Even sending a text message was a struggle. I needed that time so desperately to catch up on sleep and give my body time to settle some of the pain.
At the end of February I couldn’t take it anymore, I had put a sick note in at work and took a month off.
I was bed bound. Crying every single day. I felt so hopeless and I simply couldn’t picture how I can live life like a non disabled person anymore.
I knew that there was something else going on with my body, I had complained for over a decade now and the symptom list just kept getting bigger and bigger and I felt trapped. I felt like I was going insane. How is everyone else managing things so easily?
If the DR’s are telling me there is nothing wrong then everyone must be experiencing this level of pain too. So why can I not cope with it but everyone else can? I am going crazy, I must be...
During my time off work: I decided to do some real research. I was up all hours typing away all of my symptoms into Google, reading blogs, and meticulously scrolling through social media accounts of people with similar symptoms as me.
One evening I stumbled across a page of a girl who was living with Ehlers-Danlos syndrome. I stayed up all night watching every single post and reading every word she had ever written. I then googled it, I read even more blogs and I just kept finding articles, symptom lists, and lists of things that rang so true to me and for the first time in a decade, I felt seen... HEARD.
I waited until it was a reasonable hour and I messaged my mum with all of the information I had formulated around Ehlers-Danlos syndrome - specifically the hypermobile type. She called me and couldn’t believe how many boxes I ticked. I found the diagnostic criteria online and to my dismay, I ticked every. single. category.
I explained to my doctor that I thought I may have this, and he laughed but agreed to refer me to Rheumatology for some investigations. The department I had been asking him to refer me to since I was 15.
I was told that I would be on the waitlist for over 2 years before I was seen. I cried, again. I KNEW in my heart that I had this condition. I couldn’t wait any longer.
My grandparents decided they would like to pay for me to see a specialist. They found a connective tissue disorder specialist who worked in Harley Street- London. I was paralyzed at first, in a complete state of shock that I would actually be seen within a few weeks. And could potentially have a diagnosis that would help make some sense of the turmoil I had been put through for the last decade.
The appointment had finished. I turned to my grandma, and as soon as our eyes met, we both started to cry.
I felt the weight of the world lift itself off my shoulders. She held me and we just stayed there. .. I was right, I have Hypermobile Ehlers-Danlos Syndrome. I called my mum, “I’m not crazy mummy, it wasn’t in my head for all these years, I have it! I have my diagnosis!”
I felt numb for a while after my diagnosis. I think I was in a state of shock. After so many years of pain, I now know what the cause of it all was and I could start getting the help I needed. The weeks and months after the diagnosis were a roller-coaster I wasn’t expecting to ride...
As of August 2024, my current diagnoses are as follows ;
– HEDS (Hypermobile Ehlers-Danlos Syndrome)
– FND (Functional Neurological Disorder)
— POTS (Postural Orthostatic Hypertension
– ME/CFS (Myalgic Encephalomyelitis)
– Fibromyalgia
– Gastroparesis
– Hip Dysplasia
A lot of things have changed in my life since I was that scared 14 year old girl feeling so completely lost and alone in her illness.
There is so much more I could talk & write about. The medical trauma, gaslighting, fights, tears, mobility aids, losing my house, giving up my job, losing all independence, and having to move back home. And having my mum as my paid carer, the list is endless.
Through it all, I have come out the other side. Albeit slowly, but I am here and I am finally getting the support and medical input I need. It hasn’t been easy and there has been a lot of tears along the way but I am so grateful to be where I am today.
Receiving a diagnosis is a privilege. And although it took me more than a decade and more, I now know what I am dealing with. Some people can go their entire lives without any kind of formal diagnosis.
If you have made it this far, thank you for reading a snippet of my journey to diagnosis.
Before I go, I will leave you with a few reminders:
The normal amount of pain to experience daily is ZERO.
Asking for help is not a sign of weakness.
Never give up fighting for what you believe is true.
Love and spoons,
Caitlin x @Chronicles.Ofcait
