This story reflects the unique experience of a young 23 year old lady from Adelaide, South Australia, who suffers from several chronic illnesses including endometriosis and IBS. Whilst reading this article, please note that these given details and information may not be applicable to everyone. Please consult a medical professional before taking any medicine or treatment as this article has not been verified by a medical professional.
Jasmine was 11 years old when she first experienced pain. When she turned 12, following her first period, her pain intensified, leading to her being hospitalized and missing out several days of school. As she grew up, she was eventually diagnosed with several physical conditions - endometriosis, chronic pelvic pain, POTS, IBS, restless legs syndrome, bladder endometriosis, seizures, asthma, and chronic pain in her lower back - as well as serious mental conditions like PTSD, OCD, depression, suicidal panic attacks, anxiety, social anxiety, people phobia, and a sleeping disorder.
Due to endometriosis and her various mental health conditions, she experiences a wide range of different forms of pain on a daily basis. She describes one form of pain as “extreme sharp pain” that penetrates “up and down my legs and in my ovaries and lower stomach”, as well as “dull numbing pains” and cramps in her stomach. The most challenging moments of her life are when she has her periods.
“I have period cramps so bad that I can’t even breathe, pain in my lower back, head, and breasts - pain so bad that I can’t move off the toilet floor for hours, being slumped over in the fetal position to get some sort of relief, and having to take all sorts of strong pain relief to numb the pain, which does always work!”
Furthermore, she has described the pain in her lower abdomen and groin as “having the constant feeling of my ovaries being ripped out of my body”, with a sense of “barbed wire tightness” in these areas. Aside from extreme pain, Jasmine also experiences hot and cold sweats, vomiting, nausea, diarrhea, increased urination caused by the pains, unpredictable seizures, and mental health issues.
LIFE with chronic pain
When asked about her worst experiences with chronic pain, she replies, “I would say everything.” Jasmine explains that having to deal with chronic pain everyday strongly affects your body and mind in several ways. For example, her endometriosis had caused an appendix infection, resulting in seven major seizures while in the hospital. She states, “I (have) never ever had seizures before and all of a sudden I started getting them. Since January this year (2021), I’ve had over 30 seizures in the last 8 months with no diagnostic reasons yet.” Jasmine plans to get tested for epilepsy, or perhaps detect brain tumors or any abnormalities in her brain to determine the cause of her seizures.
HER SOCIAL MEDIA JOURNEY
Jasmine believes that, by using social media, she can raise awareness on chronic pain, as well as sharing her story to a wider, international audience. She wants to be heard by having a voice on social media platforms, whether it be by giving supportive advice to others suffering from similar conditions, befriending women who also suffer from similar pains, or educating men to better understand the hardship carried by their female friends or counterparts.
dealing with stigma surrounding youth with chronic pain
Throughout high school, Jasmine experienced bullying for several things: frequently visiting the sick room due to her excruciating pain, going home early, or for having her dad drop off pads whenever her period was particularly heavy. As time went on, her pain, coupled with the extensive bullying, made it increasingly difficult to stay in school, which eventually resulted in her dropping out of school.
Reflecting on her journey so far, she expresses that her relationships with friends and family have been broken as a result of her chronic pain. Additionally, she recounts many difficulties with medical professionals when it came to handling her conditions.
“I even had doctors not believing in my pain and making me take many blood tests per week. I could remember having to have blood tests done on both arms before going to Tafe (an educational facility) and having big bruises on my arms, while everyone was staring at me, judging me. However, I decided that I needed to find a better doctor who believed in me”
Fortunately for Jasmine, she discovered two phenomenal doctors who assisted her in completing Tafe.
Nevertheless, her struggles with the medical gaslighting did not end here. During her visits to the hospital, she was often referred to as “the bulimic patient” and the patient who was “exaggerating her pain for attention”. These accusations brought severe discomfort to her and her family. She states, “I could even remember my dad screaming at the hospital doctors saying I was in pain, it was real, and that I’m not bulimic… this never worked. I was treated so badly..”
Jasmine eventually stopped going to the hospital - even when her conditions were severe and beyond bearable.
To this very day, being 23 and soon to be married, she is still regarded by many people around her as ‘attention seeking’ and even ‘lying about her pains’. On the other hand, her recent visits to the hospital made her realise that endometriosis, compared to before, had become significantly more discussed and well known, as more doctors and nurses began understanding her pain. This change in attitude alleviated some of her previous reluctances, and she exclaimed, “it was a wonderful feeling that everyone is getting more educated about endometriosis!”
TO YOUNG PEOPLE SUFFERING FROM CHRONIC PAIN...
“Speak up, let your voice be heard. Your pain is real and raw. It’s not all in your head! Find a great doctor who will believe in your pain! Find a supportive group of friends and make your family understand more about your pain!!”
“You’re fighting enough battles as it is, so don’t tolerate people with bad behavior. Remove yourself from that type of negativity, and find people who will be by your side and believe in you. Trust me it’ll get better over time. Keep pushing for your rights, I believe in YOU!”
Jasmine's Tips and tricks
In terms of treatment, here are some of the most effective remedies that Jasmine used (everybody’s body and conditions are different, please ensure that you consult with a trusted physician or medical professional before trying out any of these treatments):
Heat - packs
Hot tea (e.g. turmeric)
Hot showers/ baths
Suitable pain medications (consult your doctor)
Jasmine also recommends that you take PLENTY of rest and drink lots of water. Moreover, she also recommends wearing comfortable clothing, doing zen, yoga, stretches and suitable exercises, however you should always seek medical treatment if pain increases. Having an emergency hospital bag on stand by is also helpful in case you have to make emergency trips to the hospital.
Another great way to help is by utilizing support resources. A book that she enjoyed reading was called “How to Endo” by Bridget Hustwaite (Instagram: @endogram). Jasmine herself also enjoys sharing her journey on social media: @my_painful_journeys, where she shares amazing advice and tips on how to cope with pain, along with some everyday activities.
Final Note from Jasmine
“Just because it ( the pain) is invisible, doesn’t mean it isn’t real! You should never judge someone by their appearance because you never really know what someone is struggling with!!”
Want to share your story?
Even if its just a few helpful tips on pain management, we would love to hear from you! Please email us if you also want to share your experiences with chronic pain at our email down below