Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Tag: invisible disabilities
Friday Thoughts: Invisible Disabilities Week
Posted on October 18, 2019 by Jenni Pettican
‘You look so well’ It’s a phrase I absolutely dread hearing. The last time I remember hearing it was at my mum’s 60th birthday. Earlier in the day friends and neighbours may have spotted me leaving the house with my walker to get on…
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I call these shots Jenni vs Self Timer in the wind 😂
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I can't believe EDS awareness month has come to an end already.
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I'm hugely proud of the awareness I've raised with and within my own community and I've loved seeing so much awareness being raised.
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This online community is a huge lifeline to so many people which I could be more grateful for. Everyday I meet more people who I com to call friends from around the world. We have a shared strength and a shared goal of making sure more of the world is aware of Ehlers Danlos so future generations have the treatment we deserved.
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Thank you so much to everyone who's watched a video, shared a post or donated to my fundraiser.
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Please remember that awareness month may be over and I will talk about it a lot less but it affects sufferers and causes us pain and a huge amount of symptoms every single day.
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@ehlers.danlos photo a day challenge day 31 - community
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#EDS #ehlersdanlos #edsawareness #ehlersdanlossyndrome #edsawarenessmonth #ehlersdanlosawareness #chronicillness #chronicallyill #chronicpain #chronicfatigue #hsd #myedschallenge #myhsdchallenge #babewithamobilityaid #disabledandcute #disabledandhot #zebra #zebrastrong #zebrafashion #zebrastrong #discoverunder5k #ootd
The last EDS Awareness Month video is now live on my YouTube channel. (YouTube.com/c/chronicallyjenni) It's something that I've never done before and that is talk to some friends and family of people with EDS & HSD and find out their perspectives. It covers hEDS, vEDS & cEDS.
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It's long but I found it quite powerful.
Hearing my friends answer the questions made me laugh and cry. If you live with EDS or HSD maybe they are questions you might like to ask your loved ones.
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Huge thank you to @eds.strong @frankskupien @dannielleroche @_adieharper @nicole.marina.p @laurenmacfie98 @jem_knight2000 & @stinkypeepers for taking part and helping us raise awareness.
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Head to the link in my bio to watch this video and all the other videos I've made this awareness month.
I challenged myself to make this year bigger and better than ever and I certainly achieved that making 6 videos including 30 zebras & 8 friends and family members from 10 different countries with 4 types of EDS and HSD. Huge thank you to everyone who took part this year. I really hope these videos have helped people and have raised some awareness.
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#EDS #ehlersdanlos #edsawareness #ehlersdanlossyndrome #edsawarenessmonth #ehlersdanlosawareness #hsd #hypermobilityspectrumdisorder #hEDS #hypermobileeds #vasculareds #classicaleds #vEDS #cEDS @ehlers.danlos @ehlersdanlosuk #myedschallenge
These photos were taken 2 days apart. If you had to choose which one would you say I was feeling better in? The one where I'm visibly tired, with an obvious support and easy clothing? Or the one with clean hair, make-up, a nice dress and a smile on my face?
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Most people would instinctively say I looked more 'well' in the right hand picture (the one from today) but I want to use this to highlight the fact that this isn't the case.
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My shoulder is still no back in place and I'm not quite over last nights awful migraine. I'm probably in more pain and more tired because I used more energy taking a shower, getting dressed and putting on makeup which I didn't do 2 days ago. My shoulder might be feeling better but the rest of me feel much worse. 2 days ago I looked awful but I made it out for a walk, today I wasn't up to it. I'm not saying this to moan or for sympathy I'm saying it so people realise that looking better does not equal feeling better a lot of the time.
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After a few bad days sometimes you need to shower and smile because you need your world to feel a little brighter even if it isn't.
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This is EDS. And it is invisible.
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#EDS #invisibleillness #zebra #thisiseds #myedschallenge #ehlersdanlos #hsd #hypermobilityspectrumdisorder #hEDS #hypermobileeds #edsawarenessmonth #ehlersdanlosawareness #edsawareness #zebrastrong #chronicillness #chronicpain #ootd #discoverunder5k @ehlers.danlos @ehlersdanlosuk
In true Drag Race Style today's question is words for my younger self. So as Mama Ru would say: 'What would Chronically Jenni have to say to 10 year old Jennifer?'
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First of all I'd be saying 'Girl, you look tired, go spend your pocket money on some concealer'.
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I'd start my reminding you it's okay to love what you love. It's okay to prefer green over pink, it's okay to be obsessed with Doctor Who & it's okay to love sports & drama. Never put yourself in a box. Those people who will make fun of you are probably just jealous. It's what makes us different that is most interesting.
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Secondly, listen to your body. Those headaches, they aren't normal, they're not just hormonal. Those 'growing pains' that keep you awake at night, they aren't normal. You aren't just clumsy. Being tired all the time, it's not normal. The pain will get worse, it will get extreme & it will be with you everyday, so will the fatigue. But keep fighting because you will eventually find people who will listen & who will do what they can to help. Never believe the ones who undermine & belittle your pain, even if they're doctors.
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There will be times in your life when you feel scared & alone & darkness will cross your mind. You're so young & you really shouldn't stress as much as you do, you don't have to make yourself mentally & physically sick trying to be the best at everything. The haters will hate, it will knock your confidence but there are so many people who believe in you that you don't even know yet. Remember your worth. You are deserving of as much love & happiness as anyone else so never settle; just because you are not being treated badly does not mean you are being treated well. .
Appriciate the health you have whilst you've got it. You have some extremely tough years ahead of you. Remember you don't have to do this alone & you can ask for help, it is not a sign of weakness but one of strength. Oh, and if you could go to China at the end of 2019 & stop a guy in Wuhan from eating a bat that would be really helpful!
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Finally, in the words of one of our favourite @pink songs 'Don't lose your passion or the fighter that's inside of you'. Break a leg, kiddo!
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#myedschallenge #eds
I know this post is talking about hopes for the future but when the photo on the left was taken exactly a year ago I wanted to talk a little about the past.
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Some things never change. Every May, to be honest everyday, I'll be raising awareness for EDS & HSD for the rest of my life. But although my clothes are the same so much has changed between these pictures.
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I live in a completely different place, with different people. I have different colour hair. I'm no longer in a relationship. I've lost 3 loved ones. I've gone from being a student terrified of reaching her goal of graduation, to eventually finding 2 jobs I love, to having them ripped out from under me by a global pandemic. None of these things I could've predicted 12 months ago.
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The fear and uncertainty remains. Especially in a time where we cannot look to far ahead. My 2020 goals went in the bin back in April and the focus has been taking things one step at a time.
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I hope that this awareness month I have taught one person something about life with EDS. And I hope in the future that EDS as a condition is much more widely understood by medical professionals & the general population. I hope through advocacy we can bring about change and management can be made better and people no longer have to wait an average of 10 years for a diagnosis.
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EDS has taught me a lot about hoping for my own future. It's taught me that things will never go as planned. So I'm not going wish to be a homeowner by the time I'm 30 or married with kids by 32. I just hope that, whatever happens, I am inexplicably happy, I am loved unconditionally and that I can continue to help others in whatever way I can.
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I hope some of that made sense I'm still a little woozy from my migraine meds 😂
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#myedschallenge day 29 - Hopes for the future - @ehlers.danlos
#EDS #ehlersdanlos #edsawareness #ehlersdanlossyndrome #edsawarenessmonth #ehlersdanlosawareness #chronicillness #chronicallyill #chronicpain #chronicfatigue #hsd #hypermobilityspectrumdisorder #zebra #zebrastrong #ootd #discoverunder5k
