My name is Jess, and I saw pictures of my legs on Instagram. I was shocked. Who posted pictures of my legs? Turns out, they were not my legs, but legs that look just like mine. How the heck did that happen? I thought my legs were a result of being fat and not exercising enough! I know I’m probably not alone in this experience. I’d like to share my story with you. And then maybe, you’ll share yours with someone you love.

The Moment of Recognition

I was scrolling one evening and saw an account that the algorithm had chosen for me. Turns out, my niece follows this account too. The poster was sharing how she had been diagnosed with a disease called lipedema and had posted pictures of her legs. They looked just like mine. I had never seen legs that looked like mine online before. She described her symptoms and how they had intensified with puberty and pregnancy. Everything tracked for me. I wondered if this was another instance of a self-diagnosed influencer account or if lipedema was in fact, real.

Navigating Lipedema in Canada

I decided to dig further. My next stop was Google, where I entered “lipedema in Canada”. The Lipedema Canada website was the first account that came up. I discovered that lipedema is in fact, real and not rare. But wait – no Canadian diagnostic code, no Canadian standards of care, not taught in Canadian medical schools. Now what? I think I have lipedema but how do I get the care that I need?

Thus began an intensive search for more information. Fortunately for me, I saw these photos at the end of June. Lipedema Awareness Month. Once again, the algorithms kicked in and my social media feeds were flooded with Facebook and Instagram accounts. I found interviews with surgeons, first hand accounts of the toll of lipedema, webinars, lists of conservative care measures and so much more.

Accepting a Progressive Reality

As I investigated further, my plan to manage the lipedema with conservative methods quickly changed as I realized that lipedema is in fact, a progressive disease. Once I was honest with myself, I realized that the symptoms I’m experiencing are worsening, both in frequency and intensity. Stubborn weight that won’t shift, pain all day instead of just in the evening, more nodules in my arms and legs, and increasing fatigue. The hiking and cycling that I enjoy so much are becoming more challenging. If I really wanted to tackle this disease and its impact on my life, I decided to consider surgery.

The Hurdle of a Formal Diagnosis

So, that brought me to the next hurdle. Getting a formal diagnosis. Not easy when physicians and nurse practitioners are not taught about lipedema in medical school. Once again, back to the Lipedema Canada website to visit the Patient Guide section. I printed a copy of the US standards of care and the newly released Lipleg study. I also found a link to the provider directory and discovered a massage therapist in my area who did manual lymphatic drainage.

I decided she would be my first stop. Cuz you know, maybe I’m imagining things, right? Prior to this appointment, I spoke with the therapist about what my goals were during the session. RMT’s cannot diagnose lipedema due to scope of practice limitations, but those familiar with lipedema can likely tell you if they suspect its presence. Bingo. Yes, my legs were showing stage 2 lipedema and my RMT wrote a detailed consult letter for me to take to my appointment with my nurse practitioner. My NP had heard of lipedema but was not familiar enough with it to formally diagnose me. I asked for a referral to a vascular surgeon who had been discussed in a Facebook lipedema group as being knowledgeable about lipedema and who could provide a formal diagnosis. And now, I wait for that appointment.

Processing the Journey Ahead

While I wait, I’ve been busy researching surgeons and joining patient groups on Facebook. Reading, planning, asking questions, hoping. Struggling with the emotions of a fresh diagnosis of a chronic disease. Finding resources. Sometimes hoping that this isn’t real. Sometimes thinking that I’m making this all up. Angry about a lifetime of gaslighting – you know the story. Eat less, move more. That one. Thankful that I finally have some answers and can take better care of my body.

My name is Jess. I saw pictures of my legs on Instagram. Actually not my legs, but legs that look just like mine. I’ll be writing a series of posts about lipedema and I’d like to invite you to come along.

Until next time. Take care.

Jess