Our experiences of chronic illness are all so different, which is why I started this series. However, there are such common themes throughout. Something I’ve been noticing is how we all like to stay positive, put our wellbeing and health first, and try to look on the bright side as much as possible.
And today’s spoonie is no different! I found Jordan on Instagram and just LOVE her outlook. Prior to her diagnosis, she was a pre-professional ballet dancer. Now, she is a full time chronic illness warrior and shares her journey on her brilliant website, Ineffably Co.
So, let’s meet Jordan Renae!
WHAT IS YOUR CHRONIC ILLNESS & HOW DID YOU GET YOUR DIAGNOSIS
My current diagnoses are hypermobile Ehlers Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). I also have a GI condition yet to be diagnosed.
EDS is a rare genetic connective tissue disorder that I was born with. It affects the joints, and the whole body. Because of EDS, I suffer from frequent joint dislocations/subluxations/instability, chronic pain, GI complications and dysmotility, and accompanying conditions such as POTS. It was quite difficult to get these diagnoses because a lot of doctors are not familiar with Ehlers Danlos Syndrome. Finally, in January of 2020 I was diagnosed with EDS by an internist.
POTS is a form of Dysautonomia (dysfunction of the autonomic nervous system.) There are many different causes of POTS, but mine is caused by my blood vessels being too weak and stretchy due to my EDS. When I stand up, my blood falls down to my feet and my blood vessels can’t squeeze it back up to my heart and brain. When this happens, I often end up fainting which is never fun. POTS is probably my most disabling condition, and is the main reason why I need a wheelchair. I was diagnosed by a cardiologist and neurologist who had me do a Tilt Table Test.
WHAT WAS YOUR INITIAL REACTION TO YOUR DIAGNOSIS
I was relieved to finally be diagnosed. I have been dealing with symptoms for most of my life, and it was so frustrating that no one could figure out why.
While I was still dancing, I noticed that I struggled to do certain things that so many other girls could, and was constantly dealing with injuries. Finally, after having my first fainting episode in the summer of 2019, I decided to start seeking medical help.
When I was diagnosed with Ehlers Danlos Syndrome and POTS, everything finally made sense. I had been searching for a diagnosis for months, and it was a relief to finally know why I am so sick and that it wasn’t my fault. I was thankful that I would finally be put on a proper treatment plan and start improving some of my scary (and in some cases dangerous) symptoms.
HOW MUCH DID YOU KNOW ABOUT YOUR CHRONIC ILLNESS BEFORE YOU WERE DIAGNOSED? WHAT WAS YOUR INITIAL REACTION?
I had no clue that EDS and POTS existed! I never went to the doctor as a child, and was not familiar with any health condition aside from the common cold and flu.
I told my pilates instructor my symptoms and she told me that I should get tested for EDS and POTS, and I was scared and disappointed. I didn’t want to go to the doctor and be diagnosed because that could end my dancing career.
WHAT IS ONE THING YOU’VE LEARNT FROM BEING CHRONICALLY ILL
Something I learned from being chronically ill is to slow down and enjoy life.
We live in a fast-paced world. I know I certainly did prior to being diagnosed. Learning to slow down and rest was a hard thing for me because I was so used to having my schedule packed with to-dos, classes and rehearsals, and so on. Living slower has given me time to spend with my little siblings, and most importantly, grow my relationship with God.
While some may not see much to enjoy while being so sick, I have discovered a great many things that bring me joy. Things as simple as using sparkly toothpaste that is supposed to be for children, or putting fun stickers on my wheelchair. Being bedridden can be boring, but I’ve learned to appreciate and find joy in the little things.
HOW DID YOU MAKE THE DECISION TO OPENLY DISCUSS YOUR DIAGNOSIS AND CHRONIC ILLNESS JOURNEY? WAS IT AN EASY DECISION TO MAKE?
I got the idea to share my chronic illness journey through a dream, and from that night on I knew that’s what I wanted to do! I was never really active on Instagram before, so when I told my family they were a little surprised.
I’m so thankful that my family has been so supportive of my Instagram and blog from the beginning till now, especially my mom who takes a majority of my photos!
HOW HAS BEING CHRONICALLY ILL AFFECTED YOUR LIFE? HAVE YOU MADE ANY MAJOR CHANGES?
My life before diagnosis and after are like two completely different lives. Since my major health decline, I’ve had to quit dancing (which was hard because they had cast me in quite a few ballets), and over the next two months I’ve had to let go of most daily life activities such as cooking, cleaning, and shopping, due to frequent fainting episodes.
My days are now spent putting lots of different joints back in their sockets around 30 times a day, daily physical therapy, numerous medications, going to doctors appointments, and lots of naps. I struggle to eat and drink due to severe pain and nausea, thus causing horrible weight loss and dehydration. I also find myself in the emergency room and hospital quite a lot, which is definitely a big way in which chronic illness affects my life.
A huge adjustment was becoming dependent on someone to push me a transport wheelchair (which my sister affectionately named, “Wheelbur”), which eventually morphed into becoming completely bedridden to cut down fainting risk, and the injuries that come along with that. It was definitely hard to lose my independence in that way.
IF YOU COULD GIVE ONE PIECE OF ADVICE TO SOMEONE WHO HAS BEEN NEWLY DIAGNOSED, WHAT WOULD YOU TELL THEM?
Listen to your body.
As a child, my tears of pain and other symptoms were sharply discouraged, which was a hard experience for a 2-3 year old. From that day forward, I promised myself to never show my pain again. I wish I had known that my body wasn’t lying and that these symptoms were important messages, warning me that if this was not addressed soon, my body would completely shut down. Unfortunately, I kept brushing off my symptoms as “nothing”, and in the summer of 2019 my health declined rapidly from there on. If I had just listened to my body and stood up for myself, I would have saved myself so many injuries.
You know your body best because you’re the one living inside of it. Don’t let anyone tell you that your symptoms aren’t valid, or even not bad enough. If you’re suffering from symptoms that really bother you, please get help from your doctor. Rest, breathe, and take care of yourself.
DO YOU THINK YOUR PHYSICAL HEALTH HAS IMPACTED YOUR MENTAL HEALTH? HAVE YOU GEVER SOUGHT HELP FOR IT AND DO YOU HAVE ANY COPING MECHANISMS?
While I was still dancing I struggled a lot with my mental health in 2018. For 9 long months I suffered from anorexia nervosa, anxiety, fear, and depression. It was the hardest year of my life. I won’t forget the day I was miraculously delivered from my mental health struggles, but that’s a long story for another time. Anyhow, as thankful I am to be past my mental health troubles, I’m even more glad that I went through those tough months because it strengthened me for the physical issues I deal with now.
Joy is my biggest coping mechanism. The joy of the Lord is my strength! Spending time reading the Bible, talking with the Lord, and listening to music are things that fill my heart with joy, and give me so much peace.
I love being with people that make me happy. I live at home with my three younger siblings (ages 16, 9, and 5) and they bring so much light to even the highest pain days. Having friends and family around you to joke with, have a mini karaoke party, or play video games with is the best. When I don’t have enough energy, a nice chat and a little laughter really makes the day brighter.
WHAT DO YOU WITH YOUR FRIENDS AND FAMILY KNEW/UNDERSTOOD ABOUT YOUR ILLNESS/DISABILITY?
Ahh, there are a great many things I could say here. If I had to only choose one, I would love it if people could understand how debilitating my chronic illnesses can be.
Some days I can hardly eat anything due to horrible stomach pain and nausea. Often, I will sustain an injury from doing practically nothing.
It’s so exhausting having my chronic illnesses and dealing with symptoms like these, but it would be easier to bear if people wouldn’t give me a hard time about it.
FINALLY, WHAT DOES CHRONICALLY LIVING MEAN TO YOU? DO YOU HAVE ANY ADVICE FOR READERS GOING THROUGH SIMILAR THINGS?
Chronically living…To me, it means living your best life! Yes, my life and the lives of so many chronic illness warriors have a few extra challenges, but that doesn’t define us or our lives. We can have just as happy, fulfilling, and successful lives as anyone else!
To anyone out there who is battling in similar battles: Having hardship gives you an opportunity to to be an overcomer, and YOU have already been given the power to be one. Keep your spirits high, and don’t give up. You got this!
A massive thank you to Jordan for taking over the Spoonie Diaries this week. Don’t forget to check out her website and instagram for more chronic illness content! Do you want to be featured in the Spoonie Diaries? Get in touch at hello@ktmy.co.uk
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