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
- I can do my own dress zipper up and down which is super handy for getting ready.
- I can use my hand as a comfortable face rest anywhere I go.
- Ehlers Danlos Syndrome has taught me not to judge other people on face value.
- I can sleep in any position, pretty much anywhere.
- I don’t need to buy Halloween face paint – the bags under my eyes are big and dark enough.
- There’s never an itchy spot on my body I can’t reach.
- I can type incredibly fast – which is helpful to meet deadlines.
- People who care about you will stay in your life and the rotten eggs won’t.
- I have got back into some hobbies that have helped give me a purpose – Art and blogging.
Other Patients Thoughts
- “It makes me more understanding when others are struggling, and I can emphasise”. – Robyn Frances Tipple – Smith.
- “I love that I can educate people and make new friends with Ehlers Danlos Syndrome known as Zebras”. – Abby Cappleman.
- “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
- “I love that I look younger due to stretchy skin”- Fiona Willis
- “It makes me a great dancer” – Justine Hills
- “My skin is super soft, no moisturiser needed” – Ashley Baliou.
Sharing is Caring
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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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
Brains & Bodies 
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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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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Your post is so informative…thank you! I was actually not aware of the Ehlers Danlos Syndrome, or ‘medical zebra’. Thank you for sharing and making all of us aware.
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Thank you , I do aim to raise awareness 💜
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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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I am not sure if it’s surgeons who use it more , but I hear it a lot in orthopaedic hospitals … in the U.K anyway . Thank you I try to share the highs and the lows xx
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Also work in the medical profession and I have never of this condition. Such an informative post, learned alot.
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Thank you 😊 I know it is hard to when there are so many illnesses out there x
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I didn’t know they were known in the medical world as medical zebras, how interesting. I learned a lot from this blog that I hadn’t heard before, thanks!
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Aww that makes me happy x
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Having a medical condition like this is so difficult. It’s a wonderful ability to be able to see the good and put a positive spin on the side effects of the condition.
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another Zebra here – I enjoyed reading all these positives. Mine would be soft, stretchy skin making me look younger than I am.
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I think that has to be my favourite to 💜
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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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Thank you I try to raise awareness for both 💜
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I’ve never heard of the term medical zebras, so this is super interesting. Thanks for sharing!
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I Had no idea that there was such a thing as the term medical zebras, i just learned something new. The only chronic illness i have to deal with is my mother’s MS.
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Yes there is sure is 🙂 oh really you must be patient and caring and have experience as a Carer xx
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The term medical zebra is new to me. It’s so admirable that you are using this platform to educate and comfort others.
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Thank you very much I feel that education and providing comfort is important x
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This is a new to me term but I love learning about something new and I really love this post!
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Aww thank you Neely 😊
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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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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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I love that Ehlers has given me confidence with other people that are the same as me. It’s comforting knowing there are other zebras in our tribe!! Awesome post!! Happy new year 🎆
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That’s so good it has given you confidence and you can speak to other zebras . Thank you for reading 😊 and happy new year too x
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The hand rest is so true haha and I can literally sleep anywhere in any position
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I know right , not sure about the quality of sleep though !
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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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Thank you so much xx
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WAIT IS FAST TYPING A COMMON EDS THING??? People are always amazed at my typing speed and ask how I do it, never know what to tell them lol
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It is for me hahah x
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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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That is hilarious Hannah, I think mine is just because my fingers are so hyper-mobile. x
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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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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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I love the fact that I could escape from handcuffs so easily
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Hi Danielle, this made me laugh but it is true.
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So wonderful to share a different perspective and see the brighter things in life, great post!
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Thank you for sharing this! It’s wonderful to pull some positivity out of this curse!
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