Wearing full-body compression and in pain, I sat for the press photographer. She thoughtfully asked questions about lipedema while she snapped photos. “I would never usually shoot from these angles” she explains as they would tend to be unflattering. Exposed for the world to see, no hiding the toll that lipedema has taken on my body.
Telling my story
The Winnipeg Press reporter was kind and thoughtful. She fact-checked the details and prepared my story for the world. How do you summate the injustice of being denied medically necessary treatment as a Canadian? The system is failing us gloriously. The Health Minister’s office has been contacted by no less than 20 people on my behalf. Including the leader of the opposition Wab Kinew. Still, after 6 weeks of begging and pleading the government ignores my case. No matter where you sit on the issue I believe that our elected officials have a responsibility to respond to us as citizens when we reach out urgently. Not a word. Not an email, a call, or a letter. Silence.
The bigger issue in Focus
It’s not about the money. Yes, $167,000 is an outrageous cost for any one person to afford medical care. No, I am not able to afford this burden. But the bigger issue here is that after more than 80 years since lipedema was first discovered Canada, has failed to employ even a single lipedema specialist. No research dollars were spent, not taught in the curriculum for medical and nursing school. The 11% of women with lipedema are set up to suffer in Canada. Home of socialized medicine and the “great Canadian medical system” that touts no one left behind. Leaving the millions of lipedema suffers marginalized and ignored by the system. I have said this before and I’ll say it until I die. Lipedema is women’s health and that is why it is chronically disregarded.
Sitting half-naked in the paper gown, crying for justice.
On the 21st of December, I sat half-naked in a paper gown for hours in the office of one last Manitoba plastic surgeon. This time a woman, I hoped that perhaps she would be knowledgeable about Lipedema as a woman’s disease. Armed with my entire medical file and my recent denial letter from Manitoba Health I sat waiting in this doctor’s treatment room. My surgery is only 12 days away I am desperate to find an advocate to help me compel Manitoba Health to cover my surgery.
In no rush
She read through my medical file and sat with me with no urgency to leave. Compassionately listening to my struggle to find care in Manitoba. She assessed my body, by now I have become apathetic to the prods of physicians. “We definitely cannot treat you here in Manitoba,” she says “we do not have the resources in Manitoba to support multi-staged surgeries for advanced lipedema patients. She calmly tells me that she is the chair of the board that recently met to make recommendations on Lipedema treatment in Manitoba. The same board that had sealed my fate only two weeks prior.
We didn’t know there was precedent! She says to me aghast. After I inform her that one of the doctors that sat on the board who had already assessed me, told me that I could not be treated in Canada for sure. Then informed me of the other patients (2) that had been covered by Manitoba Health for surgery in California in August 2021. This doctor withheld all of this information from the board and instead stated they had been “performing cosmetic liposuction on early-stage Lipedema patients for the past month as a private paid service”.
Conflict of Interest
This doctor’s failure to disclose to the board his prior knowledge of a precedent for coverage. As well as the assertion that they could treat women with lipedema in Manitoba using unsafe techniques for their financial gain strikes me as unethical. Surely a conflict of interest.
The chair of the board tells me that definitively none of the board members had been to a medical conference in at least 3 years due to covid. Therefore, none of them had been updated on the advances in Lipedema research and treatments. She shakes her head in frustration at the lack of information she and the board had at their disposal. My tears wet my mask while I sit in her exam room still half-naked in my paper gown.
A true champion rises after defeat
Hope is not lost
The doctor straightens up in her chair as I ask her directly if she will help me. “Will you advocate on my behalf?” I ask “Will you help right this injustice?” She assures me that she will look into the matter presently. That was December 21st and still, there is no word. No surprise given the holiday crush. Government goes away on holiday while every day I wait. Waiting for news that feels like it will never come. How have I not lost all hope yet? It must be a skill I have learned from trauma. In the face of everything going dark and seemingly hopeless, I am never without a faint hope in humanity. Foolish maybe? but I have never believed I was helpless even in the face of hopelessness. There is always another move, another reason to rise.
The Media
Christmas Eve and the story breaks. The thoughtfully written article by the Winnipeg Free Press goes live. Fated to be lost in the Omicron and Christmas may-lay. I spend the day hiding from my phone avoiding the jeers from Joe Public. It feels raw to be so public. After all, I started this blog anonymously as a way to share from a safe distance. Now photos of my broken body portray my real struggle for all to see. I wait to hear from the Health Minister’s office, but like a bad date she again stands me up.
Emma?!” he says “It’s Wab”
The leader of the opposition Wab Kinew calls me with a kindness that feels like an old friend. ” His approachable tone leads to a recounting of the events thus far. Appalled by the Ministers lack of response he states that his office will draft a letter to them immediately to implore the Health Minister to do the bare minimum and respond to me after 6 weeks of desperate pleas. I am heartened to know someone in government is hearing me. I can only hope that he too is as fierce a warrior as I, and see this fight through with me.
Pivot
With Omicron bearing down on the world and the fourth wave adding additional layers of complexity to travel and surgery; I am up at night thinking of strategy. Each day as the news break of rising cases I fear my surgery getting lost in the fray. Will I even make it to California?
Over Christmas, thousands of flights are cancelled or delayed. Passengers are stranded with nothing to do but wait. I start thinking we might need to toss everything in the car and make a run for the border. I am no stranger to long-distance driving as my years as a touring musician has given me a hardened road-warrior status.
On the 27th of December, I was all but convinced that my love and I would be driving down to California. The powerlessness of the entire situation left me in flight mode. Endless research on the routes and distance. It would take us 4 days of driving to make it from Winnipeg to LA.
The Great Canadian California Christmas Caper?
Reports of winter storms through the mountains of Wyoming and Montana swiftly bring the gravity of the caper into focus. How will I survive a 4-day road trip home after surgery? If I fly home alone while my love treks home to Canada how will I manage? I lay awake for what feels like months pondering every option.
Needing specialized surgery far from home is overwhelming at the best of times… these certainly are not the best of times. So again I pivot.
Happy New Year from the airport
I waited on hold for 9 hours with WestJet today trying to change my flights to give me lead time ahead of my surgery on January 4th. In true Emma fashion, I ran out of patience and headed for the airport. I waited in line, still on hold with WestJet in one ear. I managed to move my departure flights to get me into California on Jan 1st. Happy New Year I guess? I’ll head for the airport at 3 am and sleep when I make it safely to LA.
With driving out of the question and flights being a matter of chance I must do everything I can to ensure I can get my surgery on January 4th. Time is not on my side. Pain is my life right now and I won’t survive long financially without being able to work as a nurse. It’s now or never.
Heartened by Friends
There are good people out there. Friends and supporters coming out of the woodwork to offer encouragement, support, and any resources available. They write letters, make calls, share the fundraising efforts, and call in favours. I am humbled. When I finally land on the doorstep of Dr. Schwartz I am sure to melt into a puddle of grateful tears. I am tired of being so strong. I just want to be healed. Our next steps are big ones and I’ll keep you informed all the way as best I can. Thank you friends for joining me on this journey.
4 Responses
Hi Emma. I’m in NZ and in a very similar situation. Like you I’m advanced stage arms & legs, specialist surgery not available here (closest is Australia) and standard lipo not funded as deemed cosmetic. After a ten year battle for diagnosis & recognition I’ve found a general surgeon who is willing to advocate for me & apply to District Health Board for funding of speciaist surgery in Australia. Although I’m told it’s unlikely to be approved I have to hang on to the little glimmer that it might be. Like you I’m exhausted mentally, emotionally & physically with living this disease 24/7, and losing myself to it.
I can’t tell you how emotional I am knowing you’re on the journey to get your 1st surgery. I’m nervous, excited, sad & relieved for you all at the same time! I’m sorry you’ve had to fight to get this far.
Please know I’m there with you in spirit & wrapping you in Lippy Sister hugs from afar.
All the best, take care & speedy recovery. You got this girlfriend!
Deen xox
Oh Deen,
It’s amazing how similar our stories can be even so far apart. Thank you for your support and kindness. I hope you also get the treatment you deserve.
All the best
Emma
May you feel at ease upon your arrival Emma and have some extra time to take a breath and relax before surgery! I think you’re in excellent hands…can’t wait to see u smile more and more when your pain is reduced with each and every surgery!