I walked for nine days! 33 miles in total. Up and down the Belly River trail in Western Montana in the summer of 2009. Nearly 300 pounds and only 25 years old, I was determined to experience the trip with my brothers through that backcountry. Being the foolish prairie girl that I was I could hardly know the pain the elevation and steep mountain hikes would present for my body. Long before I knew about my lipedema. All I knew was my body hurt when I walked but didn’t want to miss out on the amazing things in life. We walked in a line; my fit athletic brothers and I. One brother leading and one following as we ventured through the untouched wilderness. Stopping sometimes every 15 feet to let me rest or stretch, or cry. They never judged me. They carried my 75-pound backpack, held my hand, and told me “we’ve got this!”. We arrived at the swinging bridge on day 5 and I had walked nearly 20 miles. Exhausted and elated I raised my arms and howled like a coyote into the afternoon sun. My youngest brother snapped this photo of me triumphant and too tired to be concerned about how I looked. Every time I think “I can’t” I remember my triumph in the mountains.
I can’t walk more than a few blocks now
Nowadays I can hardly walk more than a few blocks, but I still imagine being able to smell that mountain air from the shores of untouched lake Elizabeth. My Lipedema slows me down now. Walking causes mind-numbing pain in my feet and ankle. My legs ache my back throbs. When I walk with my kids they walk ahead of me because I am so slow. My love walks beside me in silent support. I know where every park bench in my neighbourhood is on my route from home to the park. On a good day, I will pass a bench or two and on a bad day sometimes I don’t make it out of sight of my house. I am 37 and I am a prisoner in my body.
I feel blessed to be able to ride my bike with ease and I love to swim. I often seek out opportunities to ride my bike rather than walk as it hurts so much.
Who is this woman?
Far from me of 20 years ago. Dancing ballet, show jumping horses, played soccer and ran through the neighbourhood with my friends until the streetlights lit up. I am determined to find a way through this struggle.
Big changes in small steps
I found myself with a serious work-related back injury in December 2020. On top of being a nurse during the pandemic being injured created a new level of stress on my body for which I was unprepared. I’ll never know what set of the cascade off worsening symptoms with my lipedema. Was it the stress? the lack of mobility-related to my back injury? or simply bad luck and timing. I don’t know.
What I know for sure is the pain has become nearly unbearable. I started a ketogenic diet back in June to help manage the inflammation and pain. I am still learning my stride with keto as some days I don’t eat enough and other days I rebel against the restrictions and try to pretend that keto does nothing to help me. Like a pendulum, I swing back and forth between helping and hurting. I try to approach myself with kindness during these times. Weight loss obsessed learning and diet culture are hard things to unlearn. I am having to learn new criteria for success in my daily journey. Weight loss is nearly impossible so instead, I am trying to find joy in the decreased pain or clearer head. But still each time I lose a pound my heart skips a beat as if that is the real only measure of success. Self-talk is so important to help to unlearn these patterned behaviours.
In the Water I am FREE
I recently joined a local gym that has 2 pools! I have found that classes like Aqua Zumba give me a sense of normalcy. My body in the water is free. I can dance, move and participate. I was smiling from ear to ear in my first aqua-Zumba class. It was truly liberating. I cannot wait to go again.
When you feel as though you cannot stand on your own; stand up for another woman, whoever she is and wherever she may be. The next time you look at yourself, you'll feel invincible, like you never needed crutches, like your own two feet are strong enough. That's the secret.
The race to regain control of my life
I have been in consultation with several lipedema surgeons across the world. Germany, Spain, and the USA. Trying to gather options for treating my lipedema so I can rejoin my life on hold. After many consultations, I think I am ready to book a future surgery date. Even as I write those words my heart is pounding. I am filled with excitement and fear all at once.
Travelling for healthcare would be scary at any time, but doubly so during a pandemic. I think I will be most comfortable travelling to the USA for treatment. As it stands right now I have no idea if Manitoba Health will cover any of the costs. However, in my heart I know I have to take the initiative to seek care regardless of the government’s position on women’s health and our rights to equitable care and coverage.
Maybe March?
March seems like the best time to go for my first surgery. For a thousand reasons but mostly that I think I need time to process this big choice. I fear living in pain any longer and further reduction to my mobility may soon rob me of my ability to work as a nurse. I have to run toward a solution.
Understanding the hurdles
So basically it goes like this… To get lipedema treatment surgery I need to seek out a lipedema specialist. Unfortunately despite living in Canada, acclaimed home to universal healthcare; there are exactly ZERO lipedema specialists in the entire country. How can that be you ask? I was also in disbelief to learn this news. It seems that the lack of knowledge about lipedema has left us with an enormous gap… nay a Grand Canyon of healthcare disparity. I feel as though a flow chart of madness is required to adequately diagram the maze of obstacles to accessing care here in Canada. All the lipedema specialists reside in countries such as the USA, Germany, Spain and so on. Of course, to receive treatment from a specialist, you have to either have insurance (like the private health coverage in the USA) or you must pay out of pocket. The cost for multiple surgeries can exceed CAD 125,000.
Most of us aren’t secretly wealthy and many of us live on a reduced income related to limited mobility and or disability. So the only hope is to appeal to the province to cover out-of-province treatment and travel.
Oh if only it were that simple!
The province of Manitoba requires an “appropriate specialist” in a relevant field to provide the diagnosis and request for out-of-province coverage. In the case of Lipedema that could include a plastic surgeon, endocrinologist, or vascular surgeon.
Patients cannot self refer to specialists so the process goes like this…
Speak with your family doctor about your suspicions that you may have lipedema. Hope to all things holy that your doctor even hears the words you are saying doesn’t simply dismiss you out of hand. As I mentioned the lack of knowledge here in Canada regarding lipedema is as wide as the ocean is deep.
My family doctor was kind enough to hear me, and I’d like to think years of being a very educated, reasonable patient (who happens to also be a nurse) helped open that conversation. Still, my doctor had never heard of the condition and was at a loss on how to help. I came prepared with a binder full of research and a shortlist of requests for care.
- A prescription for custom-fit compression garments
- confirmation of my diagnosis
- a referral to a vascular surgeon (I had a name in mind based on some others suggestions in Winnipeg)
I left the office with the referral I requested and a prescription. However, my doctor simply could not diagnose a condition of which she “had no knowledge”. I went home to patiently await a call from the vascular surgeon.
That call never came. I followed up weekly for months with the vascular surgeon’s office. Covid backlogs had ground the referrals to a halt. I was informed that this surgeon (the only doctor in all of Manitoba that had been known to diagnose lipedema to date) was no longer taking referrals and I would not be seen.
Back to the family doctor with a shortlist of new ideas. I again asked if my doctor would confirm my diagnosis. After all, she had now had a chance to review the literature I provided in “my binder”.
Unfortunately, she again said no as she “wouldn’t be comfortable” with her limited knowledge. So I asked for referrals to multiple endocrinologists, vascular surgeons, plastics, genetics… cast a wide net! Back home again to await word from the specialists.
Waiting for good news
Letters from the “specialists” started coming back stating they didn’t have knowledge of lipedema and therefore they refused to see me.
All the while I continued to be subjected to fatphobic doctors. At one point a specialist saw me related to my back injury. Despite that I described my lipedema as part of my health history he stated in a letter to my doctor that I must be a diabetic because I was so “clearly obese”. This doctor had the audacity to write in my file “patient states she has lipedema, a condition of which I know not. – patient states she does not have diabetes – however, her BMI is high so I suspect that she does”. I was gobsmacked. Furious. Dismissed. The choice to remain ignorant to the point of negligence is simply inexcusable.
As it happened two of the endocrinologists had responded with appointments for assessment. I did my blood work ahead of time to help dissuade any notions of having metabolic issues (diabetes etc). One of the hallmarks of classic lipedema is a clean bill of health otherwise. Lower instances of diabetes, high blood pressure, or other classic presenting issues with “obesity”. The reason is that lipedema is NOT obesity. While in the later stages the two may occur simultaneously they remain two separate conditions of differing origin.
So onward to the endocrinologist, I went. The first endo simply stated that she had no knowledge of Lipedema, but she kindly wanted to tell me to my face rather than respond coldly in a letter. Her kindness was noted. She of course acknowledged that my blood work was perfect and I certainly was NOT a diabetic.
The next day I saw the second endocrinologist. A doctor I had seen previously when I was 25 and wanted answers as to why I could not lose weight despite being active and eating well. He vaguely recalled my face and reviewed his notes and my bloodwork. He did for me what few had done before.
He listened.
I brought two binders full of scholarly research and diagnosis manuals on lipedema. As well as letters confirming my diagnosis from the international lipedema specialists I had consulted (all five of them). He read everything. I sat with my heart pounding at the idea that I might get the help I needed. Sitting in what felt like eternal silence I held my breath.
He did a physical exam and agreed that I do have Lipedema stage 3. He agreed to write a letter to Manitoba Health for out-of-province coverage. He was sure to let me know that hope of coverage was limited and to protect my feelings and expectations.
Did you follow all that?
So to recap… months of run around, more than a dozen doctors consulted, 11 refusals of care… just to get a letter to send to the province in the hope of getting treatment.
The steps:
- find a family doctor that believes you and is willing to refer you to specialists
- find a specialist that knows anything about lipedema
- get a confirmation of diagnosis
- get a referral for treatment out of province
- wait to be rejected by the province (as they have never covered lipedema treatment in Manitoba to date)
- apply for an appeal with Manitoba health (where you will have to represent yourself and your argument for why you should have the right to healthcare)
- If denied then pay out of pocket for treatment OR suffer in pain.
Access to healthcare shouldn’t be this difficult
As a nurse, I am appalled at the process I have uncovered. How can I be the care provider in one setting yet not be able to access care myself? The disparity and barriers in healthcare for lipedema sufferers are unacceptable.
I remind myself that even when I think “I can’t”… I must triumph! Remember that girl that walked in pain for nine days to reach the sunshine on the western face of the mountain. I am walking that mountain all over again. My lipedema journey is far from over. Just like my brothers surrounded me in support on that adventure I choose to love myself through this journey. Seeking my strength in knowing I am not just fighting for myself but for all of us in this race to reclaim our lives.
6 Responses
Wow! I’m a Canadian living in the U.S and just starting the lipedema journey. I can’t wait to hear from you that surgery is scheduled!!!
Thanks for sharing your story! I know it will resonate with many, just as it did with me. I’m truly thankful we have crossed paths!! I feel your strength and I am enspired!
Loved reading your story & admire your bravery in sharing! So many similarities to my own story…my life is also in a holding pattern of “just existing”. You’re so right – being heard & getting treatment shouldn’t be this hard. Take care & all the best on your journey to treatment.
thankyou for your inspiring story of not giving up. It made me well up with tears as you so accurately described how lipedema affects peoples lives. Sending massive good wishes to you. Be
I so related to your story! I’m in the USA and had the same issues you did with medical care! I had to travel 500 miles to the Cleveland clinic in Ohio to be officially diagnosed by dr. Bartholomew. He was very knowledgeable in lipedema and I was so relieved I cried! Someone finally officially diagnosed me with lipolymphedema stage 3…types 2 & 4. I went on a ketogenic diet and lost 100 lbs. I am now pursuing liposuction and things are getting better. It’s sad that I am 66 yrs old and just now getting some relief. Good luck to you.