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.
I am now knee-deep in an intense diagnostic and rehabilitative process which has been long and painful, but has also provided amazing insight into my body and limitations. I now know that I have several health conditions that provide a far better explanation for my difficulties in life rather than just being “delicate.”
We frequently hear inspiring stories about people with illnesses or disabilities, usually when 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 feel that they don’t quite fit the label of disabled or chronically ill, despite significant physical or mental limitations.
So far, I have been diagnosed with Joint Hypermobility Syndrome (now known as Hypermobile Spectrum Disorder), Temporomandibular Disorder (TMJ or TMD), Fibromyalgia, Orthostatic Hypotension, Sinus Tachycardia, Asthma, food allergies (with a history of Anaphylaxis), food and chemical sensitivities , Migraine with Aura, Menorrhagia and Pre-Menstrual Dysphoric Disorder (PMDD). I was also recently given a clinical diagnosis of Ehlers-Danlos Syndrome, and this is likely the underlying cause of several of my other health problems. I am currently awaiting the genetic testing to find out which type/s I have.
I also have frightening episodes of severe vertigo and partial paralysis. These appear to be linked to my migraines but still require further investigation.
I am a survivor of teenage Hypoadrenalism, which was not diagnosed in a timely manner and then poor 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 this year to re-build these things and take pride in the person I have become through these experiences.
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.
P.S. Due to the nature of the conditions that I will be discussing, I may be covering some sensitive material so please look out for possible content warnings at the top of each post. Dealing with multiple illnesses that affect both physical and mental health is highly complex and individual. I can’t promise that I will always get things 100% “right” or be able to represent everyone’s experience but I will always welcome respectful questions or feedback in the comments.