This diagnosis has broken me twice now. The first time on the night I received my diagnosis was back in July. Then again last week when I was denied medically necessary surgery by the province of Manitoba. Sobbing from a guttural place, the accumulation of months of tension and effort shattered me. Like a pressure release valve, I hissed with grief. My inner warrior also wept. For these moments my strength came not from standing up for myself but from allowing myself to fall apart.
On my Own
Manitoba Health has failed me gloriously. They doubled down on their refusal to provide me with urgently needed, medically necessary surgery. They claim treatment is available in Manitoba. They won’t tell me or my doctors where or from whom. They have all the power and no accountability for their sources of information. Despite my doctors writing incredibly detailed letters explaining the specialized nature of lymphatic sparing liposuction for lipedema, the medical consultant simply states “liposuction is available in Manitoba”.
Gaslighting
Let’s call this what it is. I have seen nearly every specialist and surgeon available in Manitoba. These trusted well-respected professionals submitted letters stating Lipedema surgery is NOT available in Manitoba. Manitoba Health calls simple cosmetic liposuction “treatment” for lipedema. This flies in the face of all standards of care, scholarly research and is decidedly wrong.
The treatment I need is not cosmetic, not simple and cannot be provided in Canada. How can I get Manitoba Health to hear me? help me? and cover this $167,000 worth of surgery?
Pleading with the Health Minister
For nearly a month now my letters, phone calls and advocacy from my local MLA to Minister of Health (Audrey Gordon) have gone unanswered. At this point, only the Health Minister has the power to approve my urgently needed surgery before it’s too late.
Amid the mounting Covid-19 4th wave and over 150,000 cancelled surgeries in Manitoba, I am but one voice begging to be heard. There is never a good time to need medical care and my lipedema has robbed me of my life to a point where I have no choice but to get care urgently.
I feel helpless to fight the Goliath of the government all on my own. I have given my best years to my career as a nurse. In my time of need, the Province has turned its back on me.
Stop Living in Fear
Finding out I had Lipedema was the first time I had the acknowledgment that struggling with my weight was not my fault. Years of struggling, exercising, starving myself, all with no ability to change the body that holds me, prisoner. The stigma of being viewed as overweight and the individual blame that comes along with being big left me feeling scared to share the news publicly.
Would people be cruel? Would they understand?
I was feeling so broken and alone, and keeping silent was only increasing the isolation. I needed the support of my community and I had to take the chance I would get hurt to be authentic about my struggle.
Through my tears on one of the hardest days of my life, I shared this news with the world on social media.
Kindness
People far and wide have been overwhelmingly supportive. So many messages of love and support. My tears of grief turned to gratitude. So many of these beautiful humans did as much as they could to help. Some wrote directly to the health minister to urge her to respond with help. Others reached out to their contacts in the media and arranged interviews to share the injustice publicly. Some dear friends started a GoFundMe to help my family afford the unimaginable financial burden.
My first surgery is only two weeks away and I will have to find $26,000 just to get started. I am the primary income earner in my household and my lipedema and back injury have left me unable to work as a nurse right now. It sometimes feels like I have run out of road.
I am blown away by the kindness of friends and strangers alike.
a little less alone
I am moving through each day in pain, holding my breath until my surgery. I am scared to death and ready all at the same time. I miss my life. I miss music. I miss feeling like I could do anything. These 4 walls feel like they are coming in on me. I am grateful to know I have so many good people out there. Even just to be able to answer honestly when someone asks me “how’s it going?”
I am done living in silence. It’s the silence that enables further neglect from the medical system. To see know us, they must hear us. So here I am. My name is Emma Cloney and I have Lipedema!
2 Responses
Sending all strength vibes your way, with great admiration of your courage. ✨