What It Cost Me: Q&A with Chelsea from Chronically Ill Goddess
By Chelsea Timandi
As part of April for Adeno, QENDO is shining a light on the costs associated with adenomyosis. If there’s anyone who understands the extent to which chronic illness can cost you, it’s Chelsea Timandi. Diagnosed with endometriosis and adenomyosis at the tender age of fifteen, Chelsea has had to come to terms with the gravity of living with chronic illness at a time when others the same age are focused on friends, school, and the future. Chelsea is an incredible advocate for patient-centred adenomyosis care, and the mind behind Instagram account @chronicallyillgoddess. Now, at 18, she is putting her passion towards studying nursing, to give back to a profession that she acknowledges has taken such good care of her throughout her adolescence. Let’s talk adenomyosis with Chelsea.
Introducing Chelsea
Hello, my name is Chelsea and I’m an 18 year old who suffers with Endometriosis and Adenomyosis, (Adenomyosis is my main girl though, she causes most of my troubles). I got diagnosed through my first laparoscopy and hysteroscopy in 2017 at 15 years old, and since then I’ve had 3 excision surgeries and 4 hysteroscopies.
I got my first period at 9 years old, and started experiencing symptoms about a year later, starting off with flooding bleeding. So at 10 years old I was pretty much battling a war between my uncontrollable bleeding that led me to letting myself bleed out all night on the toilet, and being in denial about being so young and having this extreme symptom already. I was feeling so alone and out of touch with my body.
That’s only the beginning! With all this craziness, fighting these diseases for half of my life already has made me extremely passionate about raising awareness and early diagnosis. I run an Instagram account @chronicallyillgoddess where I post a lot of factual, myth busting information as well as my own personal experiences. I’m now studying to be a Registered Nurse and my absolute dream is to work in the hospital where I have been treated at for my Endo and Adeno for the past 4 years.
When did you first start experiencing symptoms of what you now know to be your endo/adeno? How did it affect your life?
This is actually crazy, but I remember being in primary school, around 7 years old, years before I even got my period and i had the typical extreme adenomyosis leg pain. My family and I just put it down to growing, but oh my goodness it was the exact same pain I still get now, nearly every day! I used to come home from school and fill up freezer bags with ice and put them from my hips down to my feet to the point I went numb. I remember doing this a few times a week, it’s that extreme throbbing, burning and weakening pain that gets me pretty much completely disabled. Now, I know this to be one of my main symptoms of Adenomyosis.
How long did it take from your onset of symptoms to diagnosis? What are some of the major barriers you faced?
About 6 years. I feel extremely fortunate though. I was diagnosed at 15 years old, with excision surgery mind you. So I’m considered one of the lucky ones which I know I am. I wish everyone got treated as early as I have. But it really did get to the point I barely ever attended school. I had major barriers within my own mind to be honest. I thought 6 week periods were normal...? I was 13 ok, I don’t understand my brain back then. I had a few gynaecologists use me as a guinea pig testing as many birth control pills as they could on me, and telling me I’m too young to operate on, so that also set me back.
We all know the cost of even being diagnosed with endometriosis/adenomyosis can be high - how much does a laparoscopy set you back? Did you have to see multiple GPs or specialists?
Laparoscopy hasn’t set me back financially, as I’ve been so fortunate to have my parents working like crazy to keep me going. I was too young to have a 4 digit number waiting for surgeries on a condition I never even knew existed as a child. Financially it has set them back, a lot. In my parents words, these past just over 3 years have cost them AT LEAST 25 grand. That’s the financial aspect.
Laparoscopy sets me back miles mentally, going through this amount of trauma so young has put me into many major depressive episodes, especially when my diseases advance each surgery. Laparoscopy set me back in school and now in university, I just had my 3rd laparoscopy 4 weeks ago in my second week of University!
Do you have any other chronic conditions that you manage?
Yes! I’ve had scoliosis my whole life, pretty moderate at 41°. I got diagnosed with POTS syndrome in 2018 which I find impacts me a lot too.
How do you manage your chronic illnesses now, what are some of your personal strategies?
Currently treatment wise I am managing off 2 Mirena IUDS and the pill. This has been my best treatment yet, I simply don’t think I would be able to live any sort of life without it. Personally, and I learnt the hard way. I really listen to what my body is saying to me. I can tell when I am doing too much and aggravate my illnesses. The hard thing is the unknown and you really have to take your illness and body day by day! I went through a really rough patch mentally and hating my body for putting me through all this torture and was constantly so angry at it, but I have learnt now to be so in touch with my body and to listen! I learnt to put myself first, if I have to cancel a plan I have to, if I have to call in sick to work, I need to.
As for the other things I do for pain apart from my pain meds, I recommend a hot bath to numb the pain and relax you, chuck in some Epsom salts and any sort of lavender to calm you too. Heat packs will always be my best friend!
What barriers have you faced since diagnosis in managing and living with your conditions?
Endometriosis and Adenomyosis have put a barrier at every single aspect of my life. I’ve had to realise, and still am trying to process that I really can’t do everything a normal person can do. I feel like I force myself to be as normal as I can though, but a lot of the time, well actually every time, it never goes down well and I’m paying for it for days. I feel as if I constantly work 20 times harder to do the normal thing, such as working my retail job. I can’t even count the amount of times I sit there fighting off my tears talking to people at work, going to the bathroom to cry, getting a drink because I am shaking and going to pass out in pain. It’s stuff any able person wouldn’t even have to think about. The amount of times I get told at work or by other people who don’t know my story ‘oh my god I would have never known!’ blows my mind, it’s like I live my life as an actor.
These people who don’t know, also don’t know that a lot of my earnings and my parents earnings goes straight towards my medical treatments, I go home from that day at work crying, I have to take off days to recover, and then I may even end up in the hospital from pushing my self too hard. Barriers, absolutely everywhere.
What has endo/adeno cost you?
Endometriosis and Adenomyosis essentially has cost me my whole life. It’s been a life sentence from the moment I got my first period at 9 years old. It’s cost me my adolescent years, spending most of my time crippled in pain in bed. It had my 15 year old self worrying about how am I going to work my surgery date around my high school exams, instead of just being the typical high school student worrying about having enough time to study. It’s cost me friends, losing myself and losing my life to the point I don’t even remember my final year of high school because I was so depressed. Endometriosis and Adenomyosis put my mental health into such a dark place where I was so angry at my sick body, I made my self sicker with an eating disorder as a way of coping and gaining control over my uncontrollable diseases.
What would you say to a younger version of yourself?
I wish I could hug my younger self. I’ve been through an unimaginable amount of trauma that I am still processing every day, at such a young age. I’m still such a baby. I just want to tell her that she is so damn strong.
Let's end on a positive note, despite the challenges of living with a chronic illness, what are some things you've gained through your journey?
Endometriosis and Adenomyosis have made me some sort of super woman, even me, a girl with no self esteem can say that I am! I am often blown away with my own trauma and endless fight with these diseases at such a young age, I just wanna say a big congratulations to myself. I get so emotional when I speak about my journey, it’s been pretty extreme. I’ve gotten myself out of suicide, an eating disorder and 3 laparoscopies in 3 years. My whole perspective on life has changed, I have sooo much passion for everything and I appreciate the smaller, beautiful things of life. I appreciate health. I adore my family and my partner so much, they really would do anything for me. I’ve made so many amazing online friends through this incredible community!
Most importantly, I found my true calling in life to be a Registered Nurse, I even cry when I’m studying I am so passionate about helping other sick people like me, oh my goodness! My dream is to work at the Wesley Hospital where I’ve had my incredible gynaecologist and all my surgeries done. I’m so lucky.