My Binder – Life Beyond Lipedema

"My Binder"

I learned really quickly through this process that I was going to need to become an expert on lipedema in order to gain access to the care that I needed. If you find yourself reading this you probably have come to a similar conclusion. Intro the concept of “my binder”, a resource that I bring to every doctors appointment ready to fill the gaps in their knowledge.

As some of you may know I am a registered nurse however, I have never really experienced barriers to healthcare as vast as those found in my quest to find a diagnosis and treatment for my lipedema. As I did my research to prepare my own understanding of lipedema I acknowledged the need to share this information with my doctors. In all my years of nursing school and nursing practice never had the condition lipedema been mentioned; I had to assume that if this was true for me it might also be true for doctors. I saw an opportunity to educate but also to help eliminate barriers to care brought up by common misconceptions regarding lipedema and obesity. Armed with information and scholarly research I have built my binder to support getting access to care here in Canada. I encourage each of us to make a binder to use to educate and act as a resource as we journey to find care for a disease.

The COntents

While each of our binders will be different based on our lived experience I think it’s important that my binder included the following:

WHO classification of Lipedema as a legitimate health condition – Check out the resources tab for a link the the world health organization disease classification.
The USA standard of care clinical guidelines – this fantastic document is a wonderful support to those doctors we meet that are keen to understand but need the direction of a standard of care. Currently the is no such resource for us in Canada. Most doctors are happy to review the document as it helps guide evidence based practice. You can find a copy of this document in the resources section. I print a copy for each doctor and leave it with them following our appointment. Even those doctors that cannot or will not help me get this information. My hope is that the next person they meet with Lipedema sparks. alight for them and they might get access to healthcare.
Lipedema Diagnostic guide with pictures – found on the Lipedema Project website, this document provides a great visual for the doctors to diagnose Lipedema step by step. Find the guide here https://milkeninstitute.org/sites/default/files/reports-pdf/Lipedema-Giving-Smarter-Guide.pdf
Letter/quotes/and prescriptions – Every time I have consulted a lipedema specialist (international surgeon, lymphatic specialist, physiotherapist etc.) I have them write letters confirming my diagnosis and suggested treatment plan. When my local physiotherapist diagnosed me with Lipedema she wrote a letter to my family doctor confirming same. Prescriptions for custom compression garments and MLD (manual lymphatic massage) are all included in this section.
Photos of my journey – I include full colour photos of my condition currently and throughout the years and progression. This includes photos from when I lost nearly 100 pounds and STILL had lipedema thighs and arms. I find this visual helps to illustrate the fact that weight-loss does not resolve the lipedema.
FAQ – common stigmatized barriers to care. Let’s face facts, many of us have heard the same tired rebuttals to our pleas for help. “have you tried moving your body more?” “have you tired losing weight?” “gastric bypass?” on and on… I created an FAQ document that touches on the most common things a doctor unfamiliar with lipedema might suggest instead of providing the care I need. For each “suggestion” I have a list of scholarly articles that address each point and clarify the doctors position and likely misinformation in a way that is non-confrontational. Nobody likes being told they are off base, and the power dynamic between patients and medical professionals can often be overwhelming. I offer my FAQ page to my doctors to ensure that I get the care I need and not dismissed as “fat”.
History of present Illness – I have a complete history of the onset of my lipedema (age 12) and all interventions I have tried (diets, exercise programs, doctors consulted), as well as a list of symptoms (frequent bruising, hyper-mobility, painful fat, swelling in the evening resolved overnight, tingling in my legs etc). I bring copies of this document to leave with each doctor to aim their charting on my case. It’s a lot of details and they can’t write as fast as I talk. To ensure accurate and complete documentation and a better chance of getting the help I need I take the guess work out of my patient history.
Lists of Conservative treatments tried and dates – From MLD to dry brushing, aqua therapy to compression. If I have done it I document it! I also provide this list to my doctors so they have a history of my interventions.
Scholarly Articles – I printed each of my scholarly articles and made a printed master list including links for the doctors. Sure they likely wont have time to read it but it sure is handy to flip to that article when I meet a common misconception about lipedema. You can find my articles list under the resources tab. Each of these is peer reviewed and of an evidence based nature. It’s so important to use only science based articles when sharing information.

No one can make you feel inferior without your own consent.

Eleanor Roosevelt

Currently my binder is in a constant state of evolution. Every time I learn something new, or find a new article I adjust my binder. I am by no means an expert at this yet, but I use each experience with each different medical professionals to help guide how I can improve the process. My plan is also to use my binder in my inevitable appeal with Manitoba Health for coverage of my reconstructive surgeries. I think of the preparation of my binder as the homework that I will need to do in order to make my best case to getting access to coverage from the system in which I work in and serve.

"My Binder"

The COntents

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