Updated: Mar 29
Remember Jasmîne's Story from last year? If you missed it, click here to read it.
Jasmîne (24) from Adelaide, Australia:
The change in my life
What is the main inspiration for you writing this second article?
"Since writing my last article, I’ve had a lot of new changes in my life and really wanted to write about them to raise awareness and to share my new lifestyle."
Could you briefly summarize the major events that happened since your first article?
"I’ve recently been diagnosed with epilepsy, cibophobia, bladder and bowel endometriosis, severe suicidal depression and agoraphobia."
Epilepsy & Bladder Endometriosis
Could you describe your journey with being diagnosed with epilepsy/ bladder endometriosis?
“After experiencing 100+ seizures in 2021 without a diagnosis, I was finally diagnosed with epilepsy after 12 months of brain scans and being studied by the neurologist team. They finally began providing medical help, and concluded that I’m epileptic to flashing lights, strobe lights and stress. Also, being overly sick causes me to have epileptic seizures. Since being medicated for my epilepsy, my seizures have reduced to now only occurring once or twice a month. (Which is so much nicer as it’s better than having 20 a month!) I was recently told that I have to go in for an emergency surgery for my endometriosis, as my severe condition is really affecting my bladder and bowel to the point that I have been incredibly sick for the past few months now.. hopefully my laparoscopy surgery will help!”
What are some of the mental health challenges you’ve faced following your new diagnosis and how are you working on overcoming them?
“Since being diagnosed with epilepsy my mental health has deteriorated rapidly. It’s been so challenging and overwhelming dealing with seizures and being ignored by the health care system! Seizures are not just convulsions or shaking uncontrollably. It’s so much more than that. It’s endless hospital visits and brain scans. It’s waking up after a seizure confused and not even knowing what year it is or even remembering what your name is. I’ve had seizures where I’ve almost broken my own bones from seizing up so bad. I’ve had to wear a wrist brace numerous times. I have had to spit out my own blood from my mouth from biting my gum while having a seizure. I’ve even woken up in a pile of my own blood because I had knocked myself out during an episode…
Having to deal with pulled muscles and bruising all over because of a seizure is mentally challenging. I can’t even do what normal people can do anymore. I can’t drive a car. I can’t go clubbing or watch tv shows or movies that contain flashing lights. Every time I go out at night, I have to try and avoid emergency vehicles as the flashing lights may cause me to have seizures. The mental struggles have been so horrible, but dealing with that on top of endometriosis is even more exhausting. Now, having bladder and bowel problems is even more difficult. Constantly battling UTIS and bowel problems daily is so unfair. I can’t eat or drink much anymore because it’s just so hard.”
Adapting to the change
What are some changes you have had to make following your diagnosis?
“My entire lifestyle had to change overnight and that was emotionally challenging for me. All the things I used to do, I now can’t do because of my epilepsy, and, now my endometriosis has gotten worse, I barely leave my own house. I can’t even eat or drink or function normally because of cibophobia (a eating disorder/ fear of food which is very hard to overcome) but I’ve been seeing a psychiatrist for it. Everyday is a new learning curve!”
Do you have any advice for others who are living with multiple chronic illnesses?
Keep advocating for yourself. Keep being strong and let your voice be heard. Be as loud as you can. Always push for answers and if you're not getting any answers keep seeing new doctors or specialists.
"Your health is important, your voice is powerful!" - Jasmîne
As a chronic pain patient, what is one thing or experience in your life that you find most comfort in?
"The chronic illness communities pages. The endometriosis and epilepsy community is beyond helpful and has helped me in so many ways. I have made so many wonderful friendships online and in person by meeting so many wonderful, powerful warriors. I also find so much comfort in my husband. He is so supportive and caring and is always by my side. He helps me out so much with everything, always taking me to my appointments and helping out around the house when I’m in pain. I also find it reassuring and comforting that my family and friends are doing their own research about endometriosis so they can have a better understanding of what I am going through on a daily basis!"
Words to other chronic pain warriors
What is something you would like people to know about the reality of living with several chronic illnesses?
"The reality is it never gets better and it never ends. We never asked for this, it's just something we have to live with… Unfortunately, not even medication or surgery will ever be able to make our chronic illnesses go away. However, in proving that each of us are incredibly strong, we have all overcome something that so many people couldn’t. We are fighters, never underestimate a warrior!"