Chronic illness can suck. We all know that. We live with it day in day out. It can be exhausting trying to convey how you feel or what you’ve been through with an abled body person. It’s a special bond of spoonies. The instant understanding, compassion and empathy that we get when we share our stories with each other.
Jess and I started our nursing careers together. Both bright eyed and bushy tailed; learning how to care for Western Australia’s sickest children. After nearly a decade in the job, Jess and I began to lean on each other more than ever because we each shared our stories and saw ourselves in each other. Finally someone else got it. Someone else understood the nuances of working in a job that was all about caring for others yet we were terrible at caring for ourselves.
Each day Jess and I would jest and joke about the reality of our chronic illness balancing routine with a fast moving 21st century and the desire to do more. We recognised the benefit we had gained by sharing our story with each other. Plus we had so much fun doing it, so we explored way that we could share our stories in the hopes of helping someone else the way we have helped each other.
This is where the Chronic Sisters Podcast was born.
The Chronic Sisters Podcast is a podcast that we created to be a space that validates peoples experiences. Chronic illness can be so isolating, so we wanted to encourage a feeling of safety and for people to feel seen. We also wanted to utilise our nursing training to help educate not only people who have the chronic illnesses but their support network too. Validate and educate, that’s our ethos. Creating this podcast has not only achieved those things but also has helped Jess and I put ourselves first and to practice better self care. To practice what we preach.
I have been a spoonie before I even knew what it meant. Ive been in and out of the health care system as a patient since I was 18 months old. I was born with a hole in my diaphragm which meant that all my organs from below my diaphragm was in my chest, which spoiler alert, isn’t where they’re supposed to be. This was the first domino. They then diagnosed me with scoliosis, which is a curvature of the spine. This brought with it years in a full torso plaster-paris brace to help correct the curve which eventually failed and I required a full spinal fusion at the age of 8 rather than at 16. During my childhood check-ups I was further diagnosis with a congenital heart disease which was unable to be managed by medications alone and at the age of 17 I had my first open heart surgery which was followed up with another open heart surgery a year later for a regurgitating aortic valve replacement. My cardiologist was the doctor that connected all of the dots and diagnosed me with the connective tissue disorder Marfan syndrome. I had all of the signs, scoliosis, heart disease, hyper mobility, long lean limbs, flat feet, high mouth pallet, narrow jaw, you name it, I had it. The fun didn’t stop there. Later on down the track my mechanical heart threw off a clot which went straight to my brain leading to a full ischemic stroke and from that I has a small part of my brain to die. I have been so lucky to fully recover from the stroke and had a successful clot removal but it left some post traumatic stress for me to handle. Recently, my chronic pain has reached new heights which was the catalyst for me to decide to have a total hip replacement to help me reduce my pain and hopefully increase my mobility.
Jess’s story began a little later in life. During her final school exams Jess started to develop debilitating irritable bowl symptoms which worsened over the years to come despite trying all of the diet recommendations and suggested medications. Seven years later, she was diagnosed with two parasites, Dientamoeba fragilis and blastocystis hominis and flew to the other side of Australia for treatment as they had become resistant to mainstream management. In the middle of all of that, Jess suffered debilitating period pain and dyspareunia which would see her faint most months. Jess was diagnosed with endometriosis and vaginismus and in 2013 underwent her first ablation laparoscopic surgery. Fast forward to 2021, despite following every endometriosis management recommendation to ever be written, Jess’s pained worsened and new symptoms started to rear their ugly head. Jess proceeded with excision laparoscopic surgery where deep infiltrating stage four endometriosis was found throughout her uterus, ovaries, bladder and bowel. Unfortunately, Jess suffered significant complications and experienced a perforation which lead to a second surgery, pelvic inflammatory disease (a severe infection of the female reproductive organs) and a hospital experience that nightmares are made of. Whilst recovering from this, Jess was knocked down once again, but this time with glandular fever which lead to severe fatigue and deranged blood counts. Taking a long time recover and once again developing a whole new range of symptoms, five months later Jess was referred to a rheumatologist and diagnosed with systemic lupus erythematosus, a chronic autoimmune inflammatory disease caused when the immune system attacks its own healthy tissues. Jess is now navigating life with an array of incurable chronic illnesses that continue to impact her every day life.
Our relationship with our chronic illnesses has been turbulent as you can imagine and we haven’t been kind to ourselves over the years and we are re-learning how to care for ourselves; properly. The Spoonie Society has helped us do that in so many ways. The Spoonie society has encouraged us not be ashamed of our needs or our pain. The heat packs that the Spoonie Society have created are so beautiful that it makes you want to use them and want to take care of your pain and that revelation and that change of mind set has been huge.
Having a multitude of invisible illnesses we face so many misconceptions about our conditions and our general existence. It's hard and don’t let anyone tell you different. Trying to balance appointments, medications, self-care, family, friends, it takes a lot of spoons. The misconception that hurts me to my core is when people make comments on the line of “ I wish I had Marfan syndrome if it meant I could be skinny like you”. That comment alone makes me shiver to my core. It’s such an invalidating comment. My condition has nearly killed me, you don’t want it.
In the future of our podcast I hope to see the community that we’ve created grow. I hope that we continue to educate and validate our listeners and that we encourage people to have the vulnerable conversations with themselves and their loved ones. We want to break down the stigma of having a chronic illness and make the conversation mainstream.
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