'I couldn't even brush my hair': The chronic condition that left Karen unable to move

Managing a chronic condition can be a full-time job. For Karen, that is certainly the case.

"Today I've had one of my three physios, and then I just had an OT (occupational therapy) appointment," Karen, 50, tells 9honey.

"I've got 22 allied health professionals and doctors to help manage me and walk beside me with this."

The Sydney woman's health struggles began during her early twenties when she began suffering severe headaches which she says felt like "being hit in the head with a cricket bat a thousand times."

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These headaches were so severe they would affect her vision. She would walk around with a towel wrapped around her head.

"I couldn't even brush my hair," she says of the pain she experienced.

At the same time, Karen was suffering from digestive issues and was severely underweight and suffering from severe diarrhoea, which persisted for 18 months.

At first, it was thought she was suffering from irritable bowel syndrome or stress. Sometimes her digestion issues were so bad she could only stomach chicken stock.

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"I managed to work until I was 34, gaining weight then losing weight. However, I needed a physiotherapist to help me function and do normal things."

It was during a trip to the UK, when she was seeing a physiotherapist there, that she was finally diagnosed with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder.

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"I suppose people with EDS, or hypermobility syndrome, everybody's different. Some people will dislocate a hundred times a day, whereas for me, my joints are quite affected and my gut and digestive system," Karen says.

By the time she was 36, Karen needed a colostomy, leaving her with a stoma bag for the rest of her life but serving to improve her digestion.

Around this time, she and her former husband began trying to have children, with no success.

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"I was told I could try for a child but nothing happened," she says.

"I ended up going to IVF but there were no eggs left, and I had early menopause because of malabsorption.

"We tried donor eggs and we were going to look at surrogacy... it was a lot of grief."

Next, came a diagnosis of Eagle's syndrome, a condition associated with the elongation of the styloid process or calcification of the stylohyoid ligament, clinically characterised by throat and neck pain, radiating into the ear.

Then, she was diagnosed with Chiari malformation, where the lower part of the brain presses on and through an opening in the base of the skull and cerebellum into the spinal canal. The cerebellum is the part of the brain that controls balance.

2021 was no better. Karen was diagnosed with cholangiocarcinoma or gallbladder/bile duct cancer.

She had suspected she may have be suffering from something more sinister years earlier.

"I knew something was wrong with the cancer the first time. I knew it in my gut," she says.

By the time it was found, she had to have her gallbladder removed, plus a two-part liver resection, appendix abstraction and radical lymph node removal, and endured six months of chemotherapy.

This year she was re-diagnosed with incurable cholangiocarcinoma in her bile duct, liver, and local and regional lymph nodes. She is now undergoing six months of aggressive chemotherapy and immunotherapy; her immunotherapy will be lifelong.

Karen is sharing her story to raise awareness of EDS and chronic illnesses as well as seeking answers when experiencing cancer symptoms.

"It impacts my life in every aspect of my day to life, from the moment I wake up untiI I go to bed," she explains.

Now with cancer added to the mix, Karen's biggest battle is her mental health.

"I was thinking I wasn't going to have five years, but I have to remind myself that I've nearly gone a few times," she says.

"We never know how long we do have, and the statistics are the statistics, but I just told them I wasn't interested in how long I had left, don't tell me.

"It can be really hard when you're seeing people die. And then living with this other chronic illness, it's like I said, it's just a permanent job looking after myself."

She chooses to focus on gratitude for everything, such as being about to go out "for a cup of coffee."

"I remember I couldn't even do that," she says.

"I might not have much money or life, but every night I sit with myself and I say, 'I have gratitude for the food I have and the roof I have over my head and the team I have'. Just mental health and gratitude."

For those experiencing health problems with no explanation, Karen urges them to reach out for help.

"I think that's a really good thing about getting second, fourth opinions, and I'm just lucky I fell into the right hands," she says.

"I never gave up looking for people and I've found the best team now. Don't give up looking. If that one doctor doesn't believe you, go find another doctor."

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