Content warning: chronic illness, mental health, medical negligence

Hi, I’m Jess, but growing up, my nickname was “delicate little petal.”

This name was always used in a good natured way, including by me, because of the extreme sensitivity of my skin and body. However, despite being blessed with a loving and supportive family, I had a deep sense of internalised shame about my legs and shoulders (which were constantly covered in bruises and burst blood vessels), my frequent illnesses, and my inability to “keep up” with my peers.

I felt a constant need to explain myself to others and never felt adequate. This lead me to spend years pushing my limits and trying to change my whole personality to fit in with the “able-bodied world”, until I crashed and burned at the end of 2019.

After an intense, three-year diagnostic process, I ended up being diagnosed with a group of related illnesses: Hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Disorder (MCAD) – sometimes affectionately referred to as the “Unholy Trinity,” as well as Migraine with Aura, Endometriosis, and Pre-Menstrual Dysphoric Disorder (PMDD).

I am also a survivor of teenage Hypoadrenalism, something which was not diagnosed in a timely manner and poorly managed by doctors. My journey to have my symptoms taken seriously and recover the normal functioning of my adrenal glands took close to 7 years and took an enormous toll on my mental health and self-image, as well as my faith in medicine. I’ve been working hard to re-build these things and take pride in the person I have become through these experiences.

We frequently hear inspiring stories about people with illnesses or disabilities once they can pack their diagnoses into neat little boxes and when they have already overcome great challenges in their lives through hard work and a clear treatment plan. However, we rarely discuss the messy stage that precedes this, during which the person has to fight, sometimes for years, to have their symptoms taken seriously, to find treatments that work for them, and to contend with the impact that their disability has on their identity and relationships.

My hope is that through telling my story I can help others with complex health challenges feel less alone. Especially those who don’t yet have clear diagnoses, or those who have been made to feel that they are undeserving of the label of disabled or chronically ill, despite significant physical or mental limitations.

Although I have found some great doctors who have helped me find partial relief from my symptoms, the greatest relief has been making peace with the body and mind that I was given and realising that I am enough.

I look forward to sharing my journey with you,
xx Jess

Delicate Little Petal is currently focused on discussing the systemic issues faced by the chronic illness and disability community, sharing support for those who are undiagnosed and/or suffering from medical trauma, and sharing adaptive living tips to promote a better quality of life for members of our community. I am also in the early stages of developing two tool-kits – one with resources for medical self-advocacy, and one for disability allies.

Due to the nature of the topics discussed, posts often contain sensitive material, so please look out for possible content warnings at the top of each page. Dealing with multiple illnesses that affect both physical and mental health is highly complex and individual. Disability advocacy is very much a team effort, and while I can’t promise to always represent everyone’s experience I will always welcome respectful questions or feedback.