Finding Strength in Stripes: A collaborative piece sharing the stories of those with EDS/HSD

My love for writing has been a constant throughout my life, however, it wasn’t until March 2018 that I decided to turn this passion into an active hobby in order to share my experience with issues concerning topics close to my heart. Fast-forward to the present day and I have had the privilege of meeting and/or communicating with some brilliant fellow content creators in the communities I have represented with my writing in the past.

Now I experienced medical neglect prior to finally being recognised and listened to, actively supported within the medical profession, and gaining trust and a healthy working relationship with my doctors and physiotherapists. This seems to be a running theme throughout the stories of many of those in the EDS/HSD community that I have had the pleasure of learning from and speaking with. This struck a thought in my head and also, admittedly, evoked a lot of frustration within me, because nobody, especially those with a disability or mental health condition should EVER be treated with disrespect in this way. It sets a precedent that our stories and suffering isn’t worthy of support, and by joining hands and speaking out I honestly think this will make a difference, even if it’s only slight; it’s progress all the same.

This is why I decided to make another collaborative piece, but this time to share the amazing and worthy stories of those within the community who wished to be a part of this project. Now I present to you ‘Finding Strength in Stripes’.

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Hello Blooms,

For the past few months, I have been dedicating a significant portion of my free time to the following project you are about to see – however, I think it’s important to mention that without the contributors you see featured in this post, I wouldn’t have been able to make this piece at all. This post doesn’t include my personal experience with EDS/HSD if you wish to read about that you can read posts in my ‘disability’ archive.

No, this post was designed to provide yet another platform for those with EDS/HSD and PoTS to share their stories in a way which doesn’t just serve as a source of humanistic education, but also as an inspiring collection of work from some very inspiring individuals within this community. Furthermore, I also wish to give a huge thanks to the Ehlers Danlos Society and those who continually support the organisation’s efforts to fund pioneering research into the syndrome, educate both medical professionals and patients alike, and provide a plethora of helpful information to those affected by the condition. Without them, I wouldn’t have been able to promote this project like I was able to. The information for the society shall be linked at the end of this post, along with a link to donate through their website.

Now without further ado, let’s begin…


Maddie

Hi, my name is Maddie and I’m 18 years old. I’m from California, but I live in North Carolina and go to school at the University of North Carolina at Wilmington. I’m studying psychology and I hope to become a therapist. My number one goal in life is to help others. I like to use my story in hopes of making others feel less alone. I run Instagram and YouTube accounts that share my struggles with mental and chronic illnesses. I love spending time with my friends, family, and puppies. I used to be a competitive swimmer (I had to give it up because of my EDS) and I love to sing. I suffer from mental illnesses as well as chronic illnesses.

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I have undiagnosed Ehlers-Danlos Syndrome, which is a connective tissue disorder that impacts every aspect of my life. My physical therapist was the first one to suggest that I have EDS. My cardiologist and then primary care providers also agreed that I have EDS. I didn’t get officially diagnosed for insurance purposes (it’s hard to get good insurance when you have EDS as a pre-existing medical condition) but all of my doctors are in agreement that I have Ehlers-Danlos.

Some doctors are absolutely phenomenal, and some are terrible, it really just depends. My physical therapist and old cardiologist ware absolutely amazing. I’ve also been treated very poorly by doctors that don’t have knowledge of EDS or don’t believe that I’m in the pain I’m in.

One of the biggest problems I gave with my EDS is hypermobility and joint dislocation. All of my joints are much more flexible then there’re supposed to be. All of my joints subluxate or dislocate every day. I have POTS (postural orthostatic tachycardia syndrome) which is a blood pressure condition that makes my heart rate shoot up and down rapidly, it causes blackouts, syncope, heat strokes, rapid heart rate, dizziness, exhaustion, as well as other symptoms. I also have PVCs (premature ventricular contractions) due to EDS. I have GI issues as well (possible gastroparesis or functioning nausea and vomiting or chrons) which causes nausea, vomiting, bowel inconsistency, etc. I have chronic migraines. I also have episodes of syncope with seizure behaviour in my eyes. I have insomnia as well. I have mental illnesses as well (depression, anxiety, insomnia, PTSD, and anorexia with bulimic tendencies). I take 21-30 pills a day to help me function like a “normal” person.

I think it’s so important to talk about EDS as well as similar conditions in order to raise awareness. I had no idea what EDS was until my physical therapist mentioned it. Only a very few people I’ve talked to know about EDS. I’ve had to repeat myself, and even spell it when I tell doctors about my EDS. There is no cure for EDS. The best we can do is manage, get pain management, get medicine to manage our symptoms. EDS is a lifelong illness and it really lowers a person’s quality of life. If more people knew about EDS, they could get the proper diagnoses, get diagnosed faster, and work on their management plan.

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The 3 things that I want readers to take from my story is that you aren’t alone, your pain is real and valid, and that it’s okay to need help! I’m here for you and I love you, you can reach me through DM, YouTube comments, or email that’s on my IG.

If you wish to see more from Madison follow the links below to the relevant platform

Instagram

Youtube


Johannah

Hi! My name’s Johannah and I’m a post-grad student. I try and spend as much of my time outdoors as I can, as I’m currently living in the beautiful Norfolk countryside, although I do often have sofa-only days as well! I also academically research accessibility in the events industry, and hope to take a chance in that field someday soon!

I was very active before my symptoms began, and was first diagnosed with Hypermobility syndrome by my basketball team’s physio after I began experiencing extreme hip pain. A slightly biased treatment plan was perhaps implemented, as he gave me some exercises to do but didn’t mention not playing on the team anymore. However, I had no choice but to quit, as it was often becoming too painful to walk around my flat some days. I felt pressure to stay on the team, especially as in the early days I found it hard to explain what hypermobility was, and what it felt like, and felt like I’d let people down when I left.

let down

The physio’s exercises weren’t helping and left me almost immobile after doing them, so I went to the GP. They were very understanding, and after excluding rheumatoid arthritis, prescribed painkillers and sent me to an NHS physio who, again, diagnosed hypermobility and gave me exercises.

My condition wasn’t improving from these painful exercises, and I had to start accepting this wasn’t going to ‘heal’. After seeing rheumatologists, GPs and physios for three years, who all diagnosed hypermobility (particularly in my spine) as the cause of the pain, I’ve mostly accepted that as my reality.

However, during an internship in Italy a year ago I received an X-ray which I had forgotten about. When I found it while clearing my room I saw that the accompanying letter noted some irregularities. I then realised that although I’d attended countless appointments with a variety of professionals in the UK, none had actually looked at my bones. Last week I went back to my GP and explained this, and happily, she booked me in for an X-ray which will (hopefully) happen at some point soon.

If nothing new comes from this, that would be fine, but it’s important for me to be sure that I’m getting the right diagnosis as the condition affects my everyday life. It’s left me with chronic pain in my hips, shoulder and back, and chronic fatigue, which often makes everyday tasks exhausting.

I am very fortunate however to have recently acquired a powerchair, which has enabled me to regain my independence outside the house. I can now go to the shops even on a painful day, and I have fewer high pain days due to being able to rest my body even when out!

It’s so important to raise awareness of ‘invisible disabilities’. I had no reference point at all when I first got diagnosed, and I, as well as the people around me, were confused for a long time. I and others couldn’t understand how I could have a condition that wouldn’t improve, especially as I looked well. It would have helped me with accepting the condition if I was aware of positive role models with similar conditions, who also could have inspired me to use a powerchair and regain my independence sooner.

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Three things that I’d like people to take away from this are:

  • It really can happen to anyone!
  • Life can still give you amazing opportunities, just different ones than you were expecting.
  • Think of mobility aids as a positive step to regaining independence, not a sign of defeat.

INSULIN N EDS

Hi there! I’m 22 years old and currently living in Australia. I have
a bachelor’s degree in Psychological Science and am also in my second year of nursing school. I plan to graduate as a Registered Nurse and do a further
postgraduate degree in diabetes education so that I can counsel and educate individuals with diabetes. Depending on how everything pans out, I would like to later complete a Master in Clinical Psychology and work as a psychologist. I am a Type 1 Diabetic and was diagnosed at age 19. This chronic health condition has strongly shaped my identity and my goals for the future.

I enjoy black coffee, orange and lychee candles, being organised, advocating for vulnerable communities, swimming, and exercising.

I am part of the LGBT+ community. I love keeping fit and healthy, as this is important to manage my health conditions, which include diabetes, hypermobile Ehlers-Danlos syndrome, POTS, craniocervical instability, generalised anxiety disorder and depression. I also suffer from Tourettes Syndrome, PTSD, and body dysmorphia.

My experience with medical professionals has not been the best. Before I was
properly diagnosed with diabetes, I was misdiagnosed by my doctor, who put my
symptoms down to anxiety. I had lost a lot of weight, was drinking gallons and
gallons of water with an unquenchable thirst, and peeing like no tomorrow (this is a
the mechanism used by the body to flush out excess glucose from the bloodstream).
When I was eventually diagnosed, I wound up in the hospital for a week, I was close to
being comatose, and my body had started to shut down due to ketoacidosis, which
had turned my blood to acid.

When a person has uncontrolled diabetes and consistently high blood glucose, their body has no way of getting energy as it cannot absorb the sugar from food without insulin. Due to this, the body will start to consume its own fat and muscle in order to get energy, which results in an acidic byproduct called ketones. Large amounts of ketones result in ketoacidosis which is extremely harmful to the body and its organs.

As a result of this traumatic experience, I gained a mistrust for health professionals
and felt that they were incompetent. This feeling was exacerbated when I
attempted to find an explanation for my chronic pain and fatigue that I had been experiencing since I was a child. I saw physiotherapists, acupuncturists, remedial masseuses, myotherapists, chiropractors, doctors – I had x-rays, dry needling, joint manipulation – nothing helped, and no one could give me an answer.

After doing my own research and scouring online forums and Facebook
pages, someone suggested I do some research on a condition called Ehlers-Danlos syndrome. I had heard of this before, and I knew some celebrities with the condition, such as Jameela Jamil. The sole piece of information that led to my diagnosis was my chiropractor explaining to me that I had very flexible joints, a better range of motion than most people and that I should not be in pain.

When I finally connected the dots, everything made sense. It was like a lightbulb turned on inside my brain, and everything I had been through had an explanation.
To give some backstory, I have always been accident-prone and constantly
injured myself in small ways. I used to swim competitively but it caused pain in my ankles, fingers, shoulders and neck. I used to lift weights a lot, but it would also cause me pain, and I’d accidentally hyperextend my joints and injure myself. I was always the kid in school who did crazy party tricks with their limbs, such as bending
my fingers and thumbs back to my wrist, or dislocating my shoulders and throwing them over my head like a human jump-rope. I have soft, stretchy skin, prominent veins, flat feet, and stretch marks along my lower half.

The thing that finally made me realise my body wasn’t “normal” was when I
dislocated my shoulder in the gym. It was excruciatingly painful, and I wanted to find an answer. I have also had chronic pain in my neck since I was a teenager (which I just assumed was normal) but turns out this is a result of craniocervical instability. When I finally found a good GP, who actually listened to me and didn’t dismiss me, he was able to refer me to a geneticist clinic, who, after clinical testing, was able to diagnose me with hypermobile EDS, POTS, and suspected
craniocervical/atlantoaxial instability.

As it is early days, I do not have a distinctive treatment plan to deal with my EDS and comorbidities. However, I have been instructed to participate in low impact exercises, such as lifting light weights, doing Pilates, and swimming (but not competitively!). These, along with conditioning exercises to strengthen my joints –
especially my neck – has helped to reduce my pain. I am still in pain, and have accepted that this is my normal and I’m not going to be “fixed”, but at least I now have strategies to help manage it.

EDS affects basically everything in my body. My joints feel like they constantly need to “pop”, and I am always cracking, twisting and popping them to find relief from a feeling of “stiffness”. While pain is the most debilitating symptom, I also have issues
with blood pooling in my legs, light-headedness and dizziness whille standing, neck instability, dislocations, and constant subluxations. I believe that EDS has also affected my gastrointestinal system, as I am almost always nauseous and have
issues with bowel movements (but I have not explored this further).

I think talking about health conditions is extremely important. Not only does it help
to raise awareness about them, but it can also help other people find answers to explain
what they’re going through. If I had never heard of Ehlers-Danlos syndrome, I
would still be struggling every day with my pain and living in the dark. Finding out
what’s going on with my body has been an illuminating and incredibly validating
experience. It has made me realise that it’s not just “all in my head” like I’ve been
told and that I’m not a hypochondriac. Raising awareness also leads to the
potential for more resources to be dedicated to cures, treatment, or management
of symptoms.

  • The main message that I would like to be taken away from my story is that
    you must always advocate for yourself. I was unfortunately born into a family that
    encouraged “suffering in silence”, and this has been incredibly hard on me
    emotionally and physically. I sat with my pain and my problems for far too long.
    When I finally stood up for myself and got the help I needed, I realised my quality of life could be so much better.

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  • Another thing to take from my story is to be proud of who you are. Just because we
    suffer from health conditions and disabilities, it does not mean we should be
    ashamed of them. Even though we might be able to do less than the average
    person, this does not mean that we are less.
  • Lastly, be kind to yourself, and recognise that your body is not a reflection
    of you. Our bodies are misguided. They are doing the best they can, and even
    though it sucks when they turn against themselves and betray you literally every
    day, we must learn to love them. For a lot of my life, I was told that I needed to be
    fixed. This came from a family who did not accept my sexuality, and partners who
    dismissed my symptoms, claiming I was making them up. I have never needed
    fixing. I am not broken. Neither are you.

If you wish to see more from Insulin N EDS click here to view his Instagram profile