Living with Chronic Illness: Balancing Missed Opportunities and Managing Conditions
Published on:
May 30, 2024
What have you been diagnosed with?
Extreme Central Sensitization, Fibromyalgia, Severe Endometriosis, Temporomandibular Disorder, Severe TMJ Osteoarthritis, Chronic Daily headaches, Anxiety, & Depression.
How did you first notice something was wrong with your health?
I first noticed my jaw clicking and grinding around 8 or 9 years old. My jaw used to lock in place, and I would be in excruciating pain trying to close it again.
When did you first start experiencing symptoms?
I guess I have had some symptoms my whole life they feel completely normal to my existence. My chronic illnesses became exacerbated after getting COVID19 in 2022.
How did you go about seeking a diagnosis?
Seeking some of my more recent diagnoses came about in such a roundabout way - I paid for an ADHD/Autism assessment. The assessment brought forward urgent issues. I was referred to a neuropsychiatrist to investigate a neurocognitive disorder, who then referred me to a rheumatologist for Fibromyalgia. That is when I got my first diagnosis of Extreme Central Sensitization & Fibromyalgia which led me down this current health journey.
How long did it take for you to receive a diagnosis?
It depends on which illness we are talking about! The TMJ disorders were diagnosed quite quickly, however the TMJ Osteoarthritis took much longer after my jaw pain didn't yield. Others like Endometriosis took 10+ years, and 16 years of suffering to be diagnosed in 2023.
How did you feel when you received your diagnosis?
I am not going to lie; I took such a hard and fast approach to getting diagnosed that I became overwhelmed by all the specialists and diagnoses I was given. I've been struggling to process the first diagnoses, let alone the second and third etc. Therefore, I have taken a much-needed break from specialists and seeking more diagnoses till after my Endometriosis surgery!
How did you communicate your diagnosis with your loved ones?
It's really hard to conceptualize chronic illness or a chronic pain issue to people who are able bodied. My mum has had a myriad of illnesses, so it was easier to communicate with her, however I feel as if no one really gets it unless they too have been in this position.
What treatments have you undergone and how have they impacted you?
Other than a lot of allied health services I haven't had too many treatments for my illnesses. I tried Botox for my TMJ pain about three times however it didn't provide enough of a difference to justify the price I was paying. I will be getting major surgery for Endometriosis in May; I am quietly confident in the surgery providing me with at least a little relief. Fingers crossed!
What is the most difficult part of your treatment, and how do you manage it?
I've been told the most difficult part of the surgery will be the recovery as my Central Sensitization will mean my pain will be a lot worse than expected. I know my mum will be there to hold my hand and provide all the comforts I need. She’s, my rock.
What has been the most challenging aspect of living with your condition?
One of the hardest parts of living with chronic illness is how much of life that you miss out on. There are so many things I wish I could be doing, travelling, working, exploring, hanging out with friends etc. So many of these things have been put on the back burner in order to manage my conditions.
“Sometimes, the only ones who truly understand our struggles are those who have faced similar battles.”
How has your daily life and routine been affected by your condition?
I can no longer work nor live by myself. I used to work full time as a Dental Assistant and Receptionist for a Dentist office and live with three roommates. Last May I had to quit my job & move back in with my parents as my conditions were worsening and I could no longer sustain a 'normal' life.
How has your condition affected your mental health and emotional well-being?
If I am candid, I have become a little more bitter & angry. My mental health and emotional well-being are essentially contingent on whether I am having a high pain day, within a flare or not. Unfortunately, this seems to be the reality of many chronically ill people. A lot of my life has become taking one day at a time.
What strategies have you found helpful for managing your emotions and thoughts?
I find advocacy and raising awareness on my Tiktok and Instagram really helps me feel less alone but also like I am still contributing good into the world. Journalling helps & I have a wonderful psychologist which really important. Sometimes it's just watching Bob's Burgers on repeat and dissociating.
How has your diagnosis impacted your relationships with your friends and family?
My immediate family is just me and my parents and being the only child means I can depend on my parents a lot. Similarly, I grew up being really close with my cousins who are of similar ages to me - whenever they can they help out and I know I can call any one of them if I need them. Friendships have been harder to manage especially when you were the friend who kept the friendship afloat! Many of my friends have fallen away because I no longer have the capacity to do all the emotional labour. Not all of them there are many that are as understanding and as helpful as my family. I've also been able to make new friends through chronic illness communities online and they have been integral through this time.
What advice would you give to someone who has recently been diagnosed with your condition?
Be prepared for a lot of emotions, especially negative ones, to rear their heads. Emotional regulation is key. Having a chronic condition means many ups and downs and fluctuations of symptoms and your mental health. Having resources, people, places, pets etc. to help you navigate the rollercoaster is essential.
What advice would you give to your past self if you had the opportunity to go back in time?
Kick and scream and demand that someone checks you for Endometriosis. Or try not to hide your pain or discomfort in order to make other people comfortable - you are allowed to feel too.
How can others be more supportive and understanding of people with your condition?
Research and listen. Make an effort to check in. Believe my pain and discomfort even if you cannot see it. I promise I am feeling it.
Looking for support and resources for Temporomandibular Disorder? Click here: https://msk.org.au/tag/temporomandibular-joint-disorders/
Want to find out more about Fibromyalgia? Click here: https://www.racgp.org.au/afp/2013/october/fibromylagia
Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at marketing@jonda.io to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together.
Disclaimer: Please be aware that the content of this patient story is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.
