Alisha Winder with her book ENDOtheLINE - The Chronic Pain Comic
December 28th, 2021
Shawnigan Lake's Alisha Winder uses drawing to capture her experiences with chronic pain, the joys of parenting, and her medical health journey.
We spoke to Alisha about her struggles with endometriosis, how art helps, and what she wants to see changed in BC.
When and how did you get into art?
Alisha: I first got into art in May of 2017 when I started drawing pictures to help distract me from the chronic pain of a disease called Endometriosis. It started with a line.
During one of my bad Endometriosis flare ups, I was standing in the kitchen, holding the counter, searching for a distraction while I waited for pain medication to work. I grabbed a pen and notebook and I dragged a line down the page.
I felt immediate relief and continued to draw, creating the image of a stick figure girl, balancing on the brink or death, stating “I’m okay”.
Alisha's very first drawing, created during an endometriosis flare up
It was the first time I used art to help me cope, process, and manage my feelings towards Endometriosis. I found drawing my own pictures were a great way to visualize the indescribable pain and internal emotions.
I started posting my pictures online to help bring humour and awareness to all invisible and chronic illnesses and received so much positive feedback from family, friends, and other online supports, that I was persuaded to publish my art collection and was inspired to create the ENDOtheLINE comics.
How would you describe your art style?
Alisha: Using a blue ball point pen and a 9x6 sketch book, I draw simple and identifiable shapes, such as circles and triangles, as well as expressive faces, to convey complex messages into relatable, humorous images.
Using this technique, I can describe the internal and external feelings of an otherwise invisible illness.
While I prefer to draw each picture monotone, I have one coloured picture which I drew for my second daughter, my “rainbow baby”, which refers to a baby that is born after a miscarriage.
Alisha's one coloured image, drawn for her "rainbow baby" born after a miscarriage
I scan the images onto my laptop where I can properly edit smudges and alignment, and then I post the pictures onto my website www.endomyline.com and my other social media sites.
I draw from my personal experiences, every day struggles, joys of parenting, navigating my medical health journey, or just funny images that come to mind.
What is endometriosis and how has it impacted you?
Alisha: Endometriosis is described as the abnormal growth of tissues, similar to endometrial cells that grow on the inside of the uterus, which end up growing on the outside instead.
It can affect multiple organs and body systems, including the diaphragm, lungs, and brain. It spreads and implants in the pelvic cavity causing internal bleeding, cysts, lesions, adhesion, and scars, which can deform organs and even bind them together.
Endometriosis affects 1 in 10 women, 176, 000, 000 worldwide. There is no known cause and no known cure. The best way to diagnose Endometriosis is through invasive laparoscopic surgery.
Endometriosis affects 1 in 10 women, 176, 000, 000 worldwide
While this disease may be characterized by blinding pain and heartbreaking infertility, it can cause many symptoms, including insomnia, fatigue, cramping, swelling, nausea, social anxiety, medical gaslighting, self-doubt, as well as the need for mobility aids and personal supports.
Endometriosis started impacting my life around age 16. That is when I first started to realize that my extremely painful periods were not normal.
When I was 26 years old and was admitted for emergency laparoscopic surgery to remove a baseball sized cyst from my ovary. It was then that the doctors were able to visually diagnose me with stage IV Endometriosis.
What are the toughest things about endometriosis?
Alisha: The toughest things about Endometriosis are not knowing when a flare up is going to happen and what things are going to trigger it. Flare ups may be brought on by physical or mental stress, changes in diet or sleep, or they may occur at random.
On bad flare days, the pain, brain fog, and nausea make it difficult to focus and manage daily tasks and can affect my ability to perform basic functions.
Do you run into any system barriers or discrimination?
Alisha: Some system barriers I found were having to see multiple doctors for multiple ailments. It takes someone an average of 7-10 year to be diagnosed with Endometriosis.
I was discouraged that such a seemingly common illness had not been mentioned, discussed, or even thought of earlier in my struggles and I cried with relief when I discovered all my symptoms had one root cause.
I then had to juggle multiple specialist appointments as well as travel by ferry to get to them. This also meant arranging time off work, having an escort, needing childcare, and figuring out accommodations.
There is also the cost of medications, medical supplies, and paramedical services that are not fully covered by health plans. The main forms of relief are drastic, life altering options which do not guarantee long term relief as there is no cure.
I struggle to look and act normal until I have to break down my walls in order for my chronic pain to be taken seriously.
Some discrimination towards Endometriosis is that this illness is sometimes seen as just a painful period, when it should be classified as a whole body disease affecting immunity and multiple organ systems. I struggle to look and act normal until I have to break down my walls and barriers in order for my chronic pain to be taken seriously.
Endometriosis is listed as one of the top most painful medical conditions but like many chronic pain sufferers, we can be discriminated against by being seen as drug seekers, attention seekers, over exaggerating, or lazy.
How has your art helped you cope?
Alisha: Art has helped me cope by providing a positive outlet for me to express my thoughts and feelings towards Endometriosis, and a way to bring humour, awareness, and an image, to an invisible illness.
It has prompted me to be an advocate for my own healthcare, to validate my feelings, and to accept my limitations. I find drawing to be something I can concentrate on and accomplish physically even when my body is not feeling well.
Art has helped me cope by providing.....a way to bring an image to an invisible illness
While I enjoy drawing, I also find some of my other hobbies to be especially helpful. I love of photography because it enables me to capture a special moment and it also encourages me to get out and explore our local nature.
I have featured some of my photographs on my website and on the cover of my book. Using multiple social media sites, I am able to connect with chronic pain sufferers, disabled people, medical professionals, authors, illustrators, bloggers, and other Endometriosis advocates.
So many people reach out with similar stories, supportive comments, or with kind words of encouragement.
Considering things that aren’t yet in place, what would help you and other persons with endometriosis or other invisible illness?
Alisha: Endometriosis must be taken seriously and recognized as a common medical condition, and not just a painful period. We need more trust in the hospital system. I shudder at waiting in a crowded hospital when I can barely make it out of my bathroom.
It’s discouraging having to wait in the uncomfortable admitting area for hours only to be told to take some pills and go home and rest. So, I suffer through my flare ups at home with the help of my family.
Endometriosis needs to be taken seriously and recognized as a common medical condition, and not just a painful period
I am lucky to have found doctor that advocates for me and understand that when I say something hurts, that it really hurts and that my pain levels are calculated differently from someone who does not suffer from chronic pain.
We also need more access to mental health support, counselling coverage, and suicide prevention and awareness linked to chronic pain, as well as more government funding for time off work for appointments, sick days, transportation to and from appointments.
How can people support your art and anything you'd like to add?
Alisha: People are able to support my art by visiting my website at www.endomyline.com where there is a link to my comic book sold on Amazon as a paperback and eBook.
You may also visit my multiple social media sites. My story was featured on When You Love Someone More Than Life Itself – Behind the Scenery (behindthesceneryphoto.com).
I appreciate when someone likes, follows, or leaves a kind comment on my posts, stating how relatable my pictures are. It was these encouraging messages that inspired me to publish my book. I created my own website in order to share my picture and to tell my Endometriosis story.
March is Endometriosis Awareness Month
March is Endometriosis Awareness Month and it would be nice for more government buildings and local landmarks to light up with yellow in order to show their support and recognition of Endometriosis and the many people who suffer from it every day.
Share information and research through posting articles, newsletters, videos, books, journals, and blogs.
For more on Alisha and her work, visit www.endomyline.com
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to email@example.com!