An Australian woman who spent decades seeking answers about her complex medical condition has pleaded with other women not to give up.
A poll of hundreds of Yahoo Lifestyle readers shockingly found 73 per cent of respondents have had symptoms dismissed by a doctor that turned out to be real.
Elizabeth has suffered with a variety of issues for as long as she can remember, and she went through hell and back to get to the bottom of what was causing her immense and never-ending pain.
The 27-year-old Melbourne artist told Yahoo Lifestyle she saw “countless” doctors, osteopaths, chiropractors, GPs, and physiotherapists to get an Ehlers-Danlos syndrome (EDS) diagnosis.
Some listened to her, but many didn’t.
RELATED:
“If doctors had identified my issues earlier and managed them with the right medication and therapy, there’s a chance I wouldn’t be in pain 24/7,” she said.
“Living in 24/7 pain was deemed normal by so many doctors.
“I’ve postponed so many milestones like marriage, motherhood, and travel because I’ve been begging for help for years, spending money, wasting time on trying to get answers.”
Do you have a story to share? Contact au.lifestyle.ent@yahooinc.com
Elizabeth painful upbringing and having symptoms dismissed
Elizabeth can remember something not being quite right with her health since she was little.
She wasn’t able to walk for more than 10 minutes without getting exhausted, with her parents nicknaming it “dizzy legs”.
Growing up, Elizabeth had issues with her vision, her teeth, and her skin, and also had developmental struggles, such as difficulty making friends and learning.
At 13, she developed “growing pains” that turned into deep aches in every joint of her body.
Two years later, she had her first subluxation, which is when your spinal vertebrae are out of alignment.
These symptoms were dismissed as period pains and no further investigation was done.
She ended up being diagnosed with Ehlers-Danlos syndrome.
(Supplied)
“No one ever really picked up on the fact I was going through something that was a lot more severe,” she said.
Sometimes she was prescribed with steroid creams to fix her skin problems, but that ended up making things much worse.
All of this obviously took a massive toll on her mental health and she had to battle her inner demons as well as her physical ones.
What was causing Elizabeth’s symptoms?
Fed up with being turned away by doctors, Elizabeth started doing her own research, and eventually came to the conclusion she had Ehlers-Danlos syndrome (EDS).
It’s a group of more than a dozen connective tissue disorders that can affect the skin, joints and blood vessel walls, according to the Mayo Clinic.
The rare syndrome can include issues like hernias, low muscle tone, premature ageing of the skin, and extremely stretchy skin.
Each disorder within EDS has its own features and symptoms, and sufferers can often have very different experiences.
The artist has struggled with doctors not taking her seriously.
(Supplied)
Elizabeth said she was “basically laughed at” when she suggested to specialists she had EDS.
But after a year of begging to be referred to a rheumatologist, she saw one who had a thorough understanding of EDS, and she finally received a formal diagnosis in 2023.
In addition to the rare illness, Elizabeth was also diagnosed with a severe case of vascular thoracic outlet syndrome, which impacts an artery connected to her heart.
It impacted the use of Elizabeth’s right arm, which, for an artist, was devastating. She underwent surgery six months ago and has been slowly regaining use of her arm.
What the EDS diagnosis meant for Elizabeth
Getting that diagnosis finally confirmed what Elizabeth had long suspected.
It wasn’t period pain, depression or a condition that just needed a topical solution.
The diagnosis didn’t lead to a cure for her EDS, but it has helped her manage her pain better.
She’s sharing her story to help arm others.
She said that the way the medical system is set up, doctors only have a limited time to determine the issue. When something more complex is involved, it can mean you slip through the cracks.
But Elizabeth said that’s why it’s so important to keep fighting if you feel something isn’t right.
The 27-year-old recently met a woman who was possibly double her age who had a very similar medical history as her. She had just “accepted” she would be in “horrific” pain for the rest of her life.
“I’ve met so many women who are suffering just like me,” Elizabeth said.
“Ask your friend, your sister, your mother, your grandmother, because women don’t talk about these things,” she said.
“It’s not really a topic of discussion, unless you want to be hailed as a crazy lady, but it needs to be.
“I think people need to be aware of the women around them that have been struggling, and again change that paradigm, change that conversation.”
Want the latest lifestyle and entertainment news? Make sure to follow us on Facebook, Instagram, and TikTok.
