Stolen Healthcare

“Manitoba Health is afraid lipedema patients will bankrupt the health care system,” said the head of the board of plastic surgery while I sat half naked in a paper gown in her office in December of 2021. I had come to her to beg for help with my crippling disease and while she looked me up and down and agreed that my disease was obvious, she was quick to remind me that for Manitoba Health, healthcare is about money and not people’s medical needs. I’d like to tell you I only heard these harmful comments one time from this biased doctor, but I heard them over and over from every plastic surgeon I visited in Manitoba.

Can you imagine sitting in your doctor’s office after a breast cancer diagnosis begging to have the disease cut from your body so you can be well, only to be told “you know, treating your cancer is going to bankrupt the province?” How absurd! Breast cancer affects 1 in 10 women (assigned female at birth persons) and Lipedema affects 1 in 10 women (afab) yet is rarely diagnosed in Canada. No sick person needs to be shamed and guilted for being sick. This disgusting practice is so deeply harmful and rooted in fat bias, and gender bias.

Medical Fat-Phobia

Living in a large body can leave you laid bare to fat-phobia and bias, medical gaslighting, and being blamed for your illness. There is a culture of blaming fat people for being fat, but lipedema is not obesity! Just as I can’t choose how tall I will be, or the colour of my eyes, I didn’t choose this genetic disease. When doctors in Canada lack the training to diagnose or treat the condition we find ourselves without the support we need to manage a crippling disease. For many, life with lipedema means constantly explaining yourself to people, and doctors, and defending your right to healthcare in Canada.

I was told there is no treatment for lipedema available anywhere in Canada. My choices were to suffer in pain and lose my mobility or fund the care internationally. So my fight for coverage with Manitoba Health was born.

Don’t say a word

For months I had to be silent about the approvals for my lipedema surgery from Manitoba Health. Manitoba Health never directly said that if ‘I go public about my approvals they will take away my healthcare coverage’. However, It was made explicitly clear through my many meetings and interactions with doctors and with Manitoba Health, that they fully intended to ensure no lipedema patient ever got the treatment they needed again. After all, they feared opening the floodgates to having to treat Lipedema.

Surgery Approvals Reneged without reason

After my full course of lipedema surgery was approved by Manitoba Health in January 2022 I underwent 3 of my 9 surgeries with USA specialist Dr. Jaime Schwartz. Then in September without warning or supporting medical evidence Manitoba Health revoked my coverage and callously told me to learn to cope with my chronic illness or “fund the treatment yourself”. The only thing worse than struggling with a debilitating illness has been being put through hell over and over by the bean counters at Manitoba Health. Not being one to back down from a fight I have been standing my ground by taking my fight to the appeals process with the Manitoba Health appeal board, as well as taking to the media and stage to bring awareness to this issue for myself and the lipedema community. I can promise you this, Manitoba Health picked a fight with the wrong human.

when government fails community prevails

In March 2023 I was so honoured that the music community in Winnipeg came together for in a show of solidarity to host a benefit concert to help me fund the treatment myself. The West End Cultural Centre stepped up and put on the most incredible night of music. With a packed house and some of my favourite fellow artists on the stage the community raised enough to fund 50% of my next surgery. I sat in the back of the room and wept with gratitude as my friends shared their gifts and talents with us all.  

While all of the Manitoba Health officials had been invited personally to attend the event and actually participate in the solution to the problem they created. Each of them declined the invitation and left their chairs empty in the front row. Further proof that this government does not show up for the citizens of Manitoba. 

With the help of the community and the GoFundMe I am able to continue my lipedema surgery and slowly make my way back to health. I am eternally grateful for the support I have received, yet saddened that it has to be this way.