Marie Leblanc, an artist from Winnipeg who is living with MCS/ES herself, is compiling information and statements to put into an MCS awareness project. There are two ideas to contribute to.
The easier one is to share shorter personal statements about your life with MCS/ES and related environmentally linked health conditions, which will be projected onto walls in a way similar to the photo below.
The other project involves answering 6 questions:
1. Have you been officially diagnosed?
2. How do your symptoms impact your life?
3. What is a typical day like for you?
4. What would you require for a better quality of life?
5. What have you learned about yourself since living with MCS?
6. How do you keep hope alive and move forward?
You can use Environmental Illness/Multiple Chemical Sensitivities/Chemical Injury/Chronic Inflammatory Response Syndrome/Environmental Hyper-Sensitivity or any other name you have been given for Environmental Sensitivities.
Marie would like permission to include your name or initials, and location (city and or province/state).
If you wish to have your photo included, please send one.
You can contact Marie via the fb post above or by sending an email to her at:
toxicnomad911 @ gmail . com
(please remove the spaces around the @ and the ./dot )
Please be respectful and only use this email for project submissions.
Marie’s 2016 contribution to the Canary in the Coal Mine project at the Martha Street Studio in Winnipeg is mentioned here.
Please try to contribute something, no matter where in the world you live! The more we speak up, the more we can change the world!
Thank you so much from Marie and linda!
My name is Vicki. I have Lyme, thyroid disease, allergies, chemical sensitivities, and endometriosis. I was misdiagnosed many times. I would like to live in a world in which women’s health complaints were taken seriously and not seen as manifestations of psychological problems. I would like to live in a world in which chronic illness was not stigmatized. I would like to live in a world in which sick women don’t have to try to look and act healthy to avoid being labeled as complainers. I would like to live in a world in which services for the disabled are not constantly cut because we are seen as a burden. Most of all, I would like to I have value. I wish I had not internalized the ableism I see each day.
*to feel I have value
Whoops–I would like to be Vicki, New York City, U.S.
I’ve been told it’s all in my head until they’ve read the doctors reports.
For me MCS feels like navigating around landmines, ready to wreak havoc in my day. No matter how positive I try to start my day, there’s that feeling I succumb to when fragrance wafts under my nose that I am not made for this world. How can others go cheerfully about their normal lives when I am crippled by it?
My name is Marcina, and I was diagnosed with CFS/ME two years ago, almost exactly. I found out information about the illness from a pain specialist that practices in British Columbia. Despite having paperwork, information sheets, and test results, my family doctor refused to acknowledge the diagnosis, so I was never given treatment or even medical advice on how to deal with it. I was prescribed gabapentin for my widespread body pain, and he never wrote anything about CFS/ME in my chart. As a result of my doctor’s incompetence, I could not return to work. I tried hard to research on my own so that I could feel better, but I was unsuccessful.
In March 2016, I made the very difficult decision of resigning from my job. The company I worked for was very understanding. At this point, I had become mostly bedridden due to the illness. I also have endometriosis, adenomyosis, and borderline personality disorder; but CFS/ME is by far the most disabling illness that I have.
In BC, Canada, the disability rates are extremely low. It is also very difficult to get on disability, and many people have no choice but to rely on welfare which only provides people with $610. The long-term disability benefits I had through private insurance via my old job was terminated because I was going to attempt to return to work, but suffered a ruptured ovarian cyst the day before returning. By the time I received my ultrasound, all evidence of fluid in the pelvis or ovarian cyst was gone. My doctor informed me that my endometriosis had returned, and referred me to an endometriosis clinic. However, after a 3 month wait, I was told they could not help me.
I moved to the United States in August 2016. I could not afford housing or food in B.C. I was living with my mom, and because I was bed-bound and living in the basement, I started to lose weight and muscle mass due to inactivity, and difficulty navigating the stairs.
I got married in September of 2016, and I am currently a permanent resident. My husband is my caregiver.
I am receiving better healthcare here, and I had a consultation with a doctor that specializes in functional medicine. Unfortunately, we cannot afford for me to continue seeing her, but she did give me resources for things that could alleviate my symptoms. However, the supplements that are most effective cost quite a bit of money too, and it’s difficult to buy them monthly on only one income.
I often have widespread pain throughout my body, tender lymph nodes, a sore throat, difficulty swallowing, extreme fatigue and weakness, tremors, nausea and appetite loss, digestive issues, headaches, brain fog, and joint pain. Sometimes, when I’m able to afford my supplements, I feel good enough to be able to go for walks and do some light household chores. Most of the time, unfortunately, I am bed-bound. It’s hard to stay positive some days, but I try to think of how lucky I am to have a caregiver, and that I am no longer living in poverty as a single disabled person.
I hope this wasn’t too long. If so, let me know.
Thank you for your replies everyone. Others can email me their stories to toxicnomad911 @ gmail . com also.