What if They’re Wrong? Lipedema: The Disease They Call FAT.
By Heather Carrigan, Stage 3 lipedema lady, New Zealand
Heather Carrigan, New Zealand
I still remember pushing play, the longer I watched, the brighter my light bulb moment shined. You mean it’s not my fault? You mean there is a name for this disease they call fat? It’s called lipedema.
“To finally find out, I did nothing to cause this disease, was so empowering- sprinkled with a touch of “I told you so.”
The relief that washed over me, as I listened to women share their lipedema journeys, something about their stories resonated so strongly with me. The realization, that I did indeed know my own body, that I wasn’t just imagining something was wrong, and even that I had known, deep down, that this wasn’t my fault. To finally find out, I did nothing to cause this disease, was so empowering- sprinkled with a touch of “I told you so.”
“For the first time in my life, I felt like I had an advocate, actually, a whole documentary full of advocates.”
I’ll be honest, it was the “I told you so” that made me want to show this documentary to friends and family and my doctors. For the first time in my life, I felt like I had an advocate, actually, a whole documentary full of advocates.
That didn’t stop me from feeling a little bit nervous as my parents sat down to watch. What if they didn’t get it? What if my dad got up and just walked out? Within minutes of watching, there were tears of understanding and realization, and they weren’t just coming from my mother and I. It meant a lot to me, that my dad finally knew, this wasn’t my fault.
“I was sick of leaving doctor’s offices feeling worse than when I walked in.”
I sent my new doctor a link to the documentary, The Disease They Call Fat – Lipedema, before my appointment. I was just so tired of being fobbed off, shamed and insulted. I was sick of leaving doctor’s offices feeling worse than when I walked in. This part of my life needed to change. I needed to be heard. Being diagnosed was wonderful and terrible. To finally put a name to it, to have a doctor who didn’t insinuate that I did this to myself and that the fat was my fault, was euphoric. The realization that because of the delay in my diagnosis, I had few treatment options, was more of a downer.
“It’s never an easy subject to broach.”
The fact that early diagnosis could have changed my life, is what made me want to share this film with a family member, who I suspected had stage one lipedema. It’s never an easy subject to broach. As she watched, I saw a light bulb light up in her, as it had in me, and many of the questions she had, had some answers.
“It’s not my fault, I’m not alone, and it’s not the end of my story.”
Diagnosis is the first step in learning to live with this disease, the second step is finding a way to not let it get you down, especially on the bad days. When I am struggling, I watch the DVD again. I listen to doctors who get it, I let the words of other women, who are also learning to live with lipedema encourage me, and I know I’m not alone in this journey.
It’s not my fault, I’m not alone, and it’s not the end of my story.
note: for 10 minute preview of The Disease They Call FAT click here
Heather, I know your words because they are my words too. We need the medical community worldwide to learn more about our condition, we need to know that those who are younger than us will not go through what we have, that they will have earlier diagnosis and therefore may have the chance to control the progression of their Lipedema. Wonderful piece. Thank you, Tess x
Such an encouraging post! There are so many women living with lipedema who can resonate with this. Thank you for sharing your story, Heather, and for helping shine a similar light on other peoples’ lives.
WOW, Heather I love your colour, it says so much, how open and alive you are. So many people who have not learned their journey are in black or big baggy clothes, you are a very open picture – well done
Very well written article Heather and I know how much your words will mean to so many people like us who live with this debilitating condition every day!
I totally agree with Teresa that we need to make ourselves heard so that others who have their whole lives ahead of them will receive the treatment they need and be acknowledged for having Lipoedema. Unlike many of us who struggled a good deal of our lives not knowing what was happening to our bodies, living in sometimes excruciating pain but worst of all being looked down on for “being fat”
Great article! Thank you Elaine x
I was finally diagnosed with Lipoedema earlier this year and was told by the specialist that I had had the condition for over 30 years by what I had told them. I had been treated for varicose excema over this time but with no success.
Beautiful post Heather! I’m sure there are women across the globe that can relate to your experience. Your shared experience let’s women with lipdema know that they’re not alone.
Great post heather you are an amazing inspirational person and you have a way with words that can remind people to find a reason to smile everyday even if they don’t feel like it xo
Such an inspiring post that I would hope gives insight to others who might be struggling with understanding why they are the way they are. Good on you, darling!
Thanks for sharing your story!
It means a great inspiration to other people, who has finally being diagnosed, after too many years of troubles, and not to mention all who haven’t been diagnosed yet. It’s really hard to accept that so many doctors never pay attention to the severe symptoms of lipedema. Instead it’s called fat. (Diagnosis: Adipositas), and you are sent home with strict orders to take responsibility for your own situation, eat less and become slim!
It’s my hope that increased information of lymphoedema will make it easier to get diagnosed at a young age, and not like me, at the age of 60 years. I had reached sixty when I got to know that I have primary edema, ie congenital failure of the lymphatic system. By now, I’m pretty satisfied, having got the right treatment, and my life has been changed for the better!
Keep on, Heather! Embrace your new life! Good luck!
You are such an inspiration Heather! Thank you for sharing your story. I too when I’m down, go and re-watch the dvd. Now I can come back to your blog also. The sentence: “It’s not my fault, I’m not alone, and it’s not the end of my story.” really resonates with me. Great article! x