15 Things Medical Zebras have Learnt to Love about their Incurable Illness: The Ehlers Danlos Series

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

If you haven’t heard of Ehlers Danlos Syndrome – you are not alone. Ehlers Danlos Syndrome is a rare, incurable connective tissue disorder that attacks many systems of the body that is caused by a defect in collagen.   Suffers on Ehlers Danlos Syndromes are known as “medical zebras” because it symbolises a rare illness in the medical profession.


With so many negatives associated with being diagnosed with Ehlers Danlos Syndrome including: chronic pain, chronic fatigue, joint dislocations, cluster headaches, bruising, bladder and gastrointestinal pain, low blood pressure and photo-sensitivity … I am going to share some positives other patients and I have learnt to love whilst living with Ehlers Danlos Syndrome.


15 Things Medical Zebras have Learnt to Love about their Incurable Illness

My Thoughts

  1. I can do my own dress zipper up and down which is super handy for getting ready.
  1. I can use my hand as a comfortable face rest anywhere I go.
  1. Ehlers Danlos Syndrome has taught me not to judge other people on face value.
  1. I can sleep in any position, pretty much anywhere.
  1. I don’t need to buy Halloween face paint – the bags under my eyes are big and dark enough.
  1. There’s never an itchy spot on my body I can’t reach.
  1. I can type incredibly fast – which is helpful to meet deadlines.
  1. People who care about you will stay in your life and the rotten eggs won’t.
  1. I have got back into some hobbies that have helped give me a purpose – Art and blogging.

Ehlers Danlos Awareness Bracelet


Other Patients Thoughts

  1. It makes me more understanding when others are struggling, and I can emphasise”. – Robyn Frances Tipple – Smith.

 

  1. I love that I can educate people and make new friends with Ehlers Danlos Syndrome known as Zebras”. – Abby Cappleman.

 

  1. “It forces me to slow down and focus on what is really important. I get to spend more time with my kids than if I was busy all the time” – Carol Youree Rothage

 

  1. I love that I look younger due to stretchy skin”- Fiona Willis

 

  1. “It makes me a great dancer” – Justine Hills

 

  1. My skin is super soft, no moisturiser needed – Ashley Baliou.

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I would love if you shared this post to raise awareness of Ehlers Danlos Syndromes and spread a sprinkle of happiness to those suffering from the condition.


Have your Say

Do you suffer from a chronic illness and have learnt to love something about your condition, since you were diagnosed?If so I would love to hear about it below.

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15 Things Medical Zebras have Learnt to Love about their Incurable Illness

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Related Posts in The Ehlers Danlos Series

My Invisible Illness ft Tramadol

16 Things A Doctor Won’t Tell You When You are First Diagnosed With EDS

Misfortunate: A Poem about Ehlers Danlos Syndrome

Through the Nutritionists’ Eyes

44 Comments

  1. I have never heard of the term medical zebras. This is a great list. I think it’s important to be able to fall asleep anywhere and whenever you need.

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    1. Whether the sleep is good or for long is debatable but a power nap is always handy 😊 I think some people who aren’t ill know the term as zebras there are quite a few words to describe chronically ill people x

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  2. Even working at a doctor’s office for many years, I had never heard of the term “medical zebra” before. I’m sure it can be rough some days, but it’s good to see that people are able to find the positives in their lives as well.

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  3. This is so new to me, thank you so much for raising awareness! I’m all about raising awareness when it comes to mental issues and disorders and I totally get how important this is!

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  4. It’s been almost a year since I was diagnosed with a genetic mutation that means I’m deficient in a key enzyme that helps us build and maintain tissues (bone, cartilage, etc.) – I’ve had random broken bones that take over a half-year to heal most recently, but had many joints fall apart when I was younger (bone and/or cartilage would suddenly die without warning – meaning more surgeries and scars than I can count w/o stopping to think about it). I’ve never been embarrassed by all my scars, even though my limbs look a bit Frankensteinish and others would probably take efforts to cover them. I remember getting a child’s book at my baby shower (at which time I was recovering from yet another emergency surgery, this one to try to save function in my right wrist/dominant hand) called “You’re Not My Mommy!” The book is about a little penguin who was trying to find his mama. All the other animals he found, he’d say, “You’re not my mama, you’re too X” (describing something about that animal). I laughed when I first read the book, because all I could imagine is my unborn child saying to strangers, “You’re not my mama – you don’t have enough scars!”

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    1. Aww it’s great you having reading as an outlet . I know the scars can get us down but I suppose it is what makes us different . I would love if people with Ehlers Danlos were referred to penguins because they are a community of clever beans . You condition sounds a bit similar to the symptoms of Lupus / Rheumatoid Arthritis x

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  5. I was completely unaware of either of these terms. I appreciate you raising awareness and educating the general public. I am a huge fan of anyone raising awareness about something they are close to.

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    1. IT IS??? OH MY GOSH. My mom actually calls me Boney fingers (have it written on a christmas bauble too!) She gets crazy over stimulated when I type too fast/too long.

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  6. I love that becoming disabled has given me a better understanding of other people. I try never to judge anyone because people judge me all the time. By my looks, my actions and my age. I’ve heard so many times you’re too young to be this sick.

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    1. I feel that I can emphasise more with people to ! I am not sure about understanding them better though hah but I also have borderline personality disorder . I hear that so much time and oh but you was fine yesterday 🙈x

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