Meet Jaimee Rae – The Badass Force Behind #EndoWall, The Rising Awareness Movement
If you haven’t heard of Jaimee Rae, you haven’t been listening. Jaimee Rae is the one-woman powerhouse behind the EndoWall – The Rising Awareness Movement. On March 10th, Rae celebrated her movement’s two-year anniversary of painting a giant mural on the side of her Cathays, Cardiff, Wales, home and inscribing it with the names of #EndoBabes around the world.
Luckily, we had a chance to catch up with her to find out what inspired her to start this project and what keeps her going.
DO YOU ENDO: You are famous for your EndoWall project; what inspired you to decide to pick up some paint and transform the side of your house and what were you hoping to achieve?
Jaimee Rae: Honestly, it was pure frustration and desperation to be heard that led me along the path of wanting to raise awareness. I really didn’t know what I was going to do but I knew that I had to try to do something, anything! Being a creative soul it was natural for me to take an artistic approach. So, I set up a photo shoot on the 10th [of] March (the date to wear yellow and get shouting) with a good friend and made use of the large blank canvas on the side of my last house in Cathays, Cardiff.
I had been diagnosed with Endometriosis yet found myself in a constant battle to get my doctors to believe that I was still in a great deal of pain and discomfort,” she said. “One GP even tried to make me believe it was all in my head, but this gave me the fuel I needed to start shouting! I never anticipated the EndoWall reaching so many, or so many wanting to stand together for The Rising Awareness movement. It has blown me away and inspired me to want to continue my mission.
DO YOU ENDO: How many names do you have so far on your EndoWalls?
Jaimee Rae: The first EndoWall had over 500 #EndoWarriors by the time I moved house. EndoWall II has over 1000 warriors and new names come in on a daily basis which will all become a part of EndoWall III and future EndoWalls. I also dedicated a brick to #EndoAngels on the original EndoWall, these are the names of #EndoWarriors that we have lost to suicide or their bodies giving up on them due to the damage done by Endometriosis. We also have dedicated a dreamcatcher section to them in EndoWall II and will do so with future EndoWalls.
DO YOU ENDO: Congratulations on the recent two-year anniversary of the EndoWall, what do you have planned for the future?
Jaimee Rae: I have so many plans for the future and hope to host plenty of fundraisers throughout the year. I want to share everything with you but will have to keep things under wrap a little while longer.
At the moment I am just trying to focus on sharing EndoWall II and finishing EndoWall III so that there are two locations there for #EndoWarriors to sign and three locations in which can be used to raise awareness. I really wanted to get EndoWall II done by the EndoWall’s second birthday on the 10th [of] March 2019. But the reality is, I am still living with Endometriosis and as you know, the Bitch certainly throws her challenges in the way. I am getting to know my body and am putting myself on a healthier pace so that I can continue to provide a positive vision for those suffering from the negative ‘invisible’.
DO YOU ENDO: So there are plans for more EndoWalls – do you have any locations in mind?
Jaimee Rae: Hell yes! I won’t be stopping there. I am in talks with people all over the world who are helping search for willing locations, which is easier said than done, but I’m positive that as the movement grows more locations will be up for joining and supporting. I do have a few solid locations further afield but until I can continue fundraising I’m afraid those are on the back burner for the time being.
DO YOU ENDO: Who are some of the people that inspire you in the endo community?
Jaimee Rae: Gosh, my Endo inspiration list is endless! Before beginning the EndoWall I only knew of two support groups but now it’s incredible how many other women I have met or follow, who are also on a journey to make a difference in their own way, shape, and form. Just to name a few…
Julie Prilling of ‘EndoStats
Silvia Young of ‘FemTruth
https://www.instagram.com/p/BwDFDznHynB/
Wendy L. Bingham of ‘Extra Pelvic Not Rare
Jahmby Koikai – for her strength through all of her suffering
She still wants to shout out and let the world know that Endometriosis is not just a pelvic condition… Thoracic Endometriosis also exits!
The Team at End-O-Short Film
And the team behind the ‘End-O Short Film‘ for shining some comedy over our realities, can’t wait to see what they create. It goes on and I wish I could mention them all!
DO YOU ENDO: Do you have any advice for people battling Endometriosis who are feeling unseen?
Jaimee Rae: DO NOT GIVE UP ON YOURSELF! You are the only one that knows what pain you are experiencing, so I would advise you to put your trust in yourself. Try to find as many ways as you can to help yourself. For a long time, I relied on others to fix my problems but the truth is I realize I wasn’t really willing to help myself enough. I am now on a much healthier path and use alternative therapies to help me through the months. When you’re able to help yourself more, you are able to track your body and begin to understand it and then work with it, instead of against it.
I am not saying that we don’t need any medical help, but that by helping ourselves/each other we can find ways to help that do not mean pumping our bodies with chemicals. Or having to have endless surgeries and deal with the horrendous side effects. Reach out to others in similar situations and hear their findings… you don’t have to work everything out on your own. We are stronger together.
DO YOU ENDO: As you are aware, last month was Endometriosis Awareness Month – how did you celebrate?
Jaimee Rae: I have been posting every day throughout March, whether it has been my work, other advocates work, tips and findings or just something yellow, every day it’s been something Endo related. I’ve also been wearing yellow from head-to-toe while I’ve been out and about in Cardiff raising awareness, so I’m hard to miss!
A book I participated in for FemTruth was published; I wrote alongside my mother and worked with my talented partner to create the front cover, so I have been promoting that. Although March is awareness month I feel it is just as important to continue the mission throughout the year. So March has actually become my planning and moving forward month. I had planned to fill March with fundraisers but I went through a rough patch just before Christmas and realized that I was running too fast for my body to keep up with. I’m finding my feet again and am working on a routine that works for me. Hopefully, by next March I’ll be completely kicking Endo’s arse!
DO YOU ENDO: What do you wish you had been told when you were first diagnosed?
Jaimee Rae: I wish that I had been given nutritional advice and guidance. Something else that I really wish is that the true side effects of some of the medication prescribed to myself and millions of others out there were told to the world. We need to help one another open our eyes and find out the truth. Not be oblivious to what we are taking, find the route of the issue and stop sticking plasters over our problems. We will never be well if we choose to stay on that path. We need to encourage others out there to want to help find alternative therapies and ways to diagnose without cutting us open.
DO YOU ENDO: There are so many factors to consider in managing our health, what do you do to stay positive in your battle with Endometriosis?
Jaimee Rae: The EndoWall is my saving grace. All of the heartbreaking but also truly heartwarming messages keep me positive and wanting to continue to bring a splash of light on what is, let’s face it, a shitty situation. Art is wonderful therapy and working with such vibrant colors really helps lift my mood when I’m feeling low. Also adding so many names together, knowing that each person truly understands what life can be like with Endo, tells me that I am not alone. And I want to return the favor by shouting out and letting you all know that YOU ARE NOT ALONE. Spending time with loving friends, family and animals is another crucial part of staying positive and my latest discovery… REST. I find it difficult to keep still but I am slowly learning that rest allows me to have short bursts of running time, therefore bringing positivity back into my body.
DO YOU ENDO: Rest is so important, but sometimes it’s difficult to do in the middle of a busy day. What is in your flare survival kit?
Jaimee Rae: I do not like to rely on any medications if I can avoid them, so I highly rely on alternative therapies; a greener route. I have acupuncture once a fortnight (once a week when things are really bad) which helps balance my natural hormones along with providing nutritional advice that I’ve not been able to receive from the medical profession. In my little ‘Be Kinder To Your Vagina’ (from TOTM) case I keep CBD oil and CBD Cream. I’ve also got a little mirror and a Burt’s Bees colored lip balm to help me feel brighter on a grey day! Everyone needs a little boost, find things that make you smile and love yourself.
Every morning I drink a 500ml herbal tea from Wellspring Herbal, which has sheep sorrel, slippery elm, burdock root, and Rhubarb in. Then I drink hot water with lemon and Turmeric to help with toxins and inflammation. I then take probiotics, Pro Soothe II, Acidophilus Bifidus Complex and Super 8 (when I can afford them all) and have 5ml of St Johns Wort which is to help with anxiety. In the evening I take magnesium capsules to help with migraines and calcium absorption. I also take charcoal tablets to help my body filter out what’s not needed from our waters. My survival kit has completely changed in the space of a year… I’ve gone from using Hormonal pills, Coils, Paracetamols, Cyclizine, Tramadol, Oramorph, IM Buscopan, Morphine, Gabapentin, Amitriptyline, and many more to scrapping all of these and I have to say my body is the best it’s been since I was 12,” she said. “I know that I’ve still a lot of adjusting to do but I’m proud to see my green survival kit doing the job better than any chemically induced kit I kept hold of before.
DO YOU ENDO: Who is your #WCW (Woman Crush Wednesday?)
Jaimee Rae: This is so difficult because there really are so many women out there fighting for what’s right. It makes me proud to be female! If I had to choose today then it would have to be my Chinese herbalist and Acupuncturist; Sian Williams. I turned to Sian four years ago and have not turned back. She is the first person who ever mentioned Endometriosis to me and recognized my symptoms. It is thanks to her that I was ever diagnosed and it’s because of her that I am on a clearer path helping myself today.
You can find Jaimee Rae on Twitter, Instagram, and Facebook. Or check out her Facebook group here: EndoWall – The Rising Awareness