National Health Blog Post Month – Day 6: Say What?
What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
The most often heard and reason I advocate and share my story of living with lipedema is that the condition does not exist, that’s is merely an excuse for being fat, blaming genes. The most frustrating is when those comments come from medical professionals. Even those professionals that had heard of lipedema, knew of it to be very rare, so rare they doubted I actually had the condition. The assumption is I am a non-compliant patient. Even when keeping food and exercise journals, I would be accused of lying, as my food intake would not account for my lack of weight loss.
A few years ago a doctor on Twitter told me I most likely did not have lipedema and lymphedema, “probably not Sarah. those syndromes are very rare & present in early childhood, often accompanied by other birth defects.” I blogged my frustration. It would be such a relief if I really was just fat, that would mean I could actually control my weight through diet and exercise, but the conditions are real, very real.
As I meet more and more women who have lipedema, and hear their stories of struggle to have medical professionals recognize and diagnosis lipedema I no believe lipedema is a rare disease, I believe it’s merely under diagnosed.
Sarah, this could be a photo of me. Thank you so much for speaking out and educating all of us. Because of you, I have an idea of what may be wrong with me, and what I need to do about it. Thank you, from the bottom of my heart.
Hi Sarah,
Thanks for sharing your story; I love your humor and your blog. I am 5’8 and normal weight but suffer from lymphedema after having undergone an ER treatment for a spider bite. Apparently the multiple treatment damaged my lymphnodes and for years I suffered from major swelling in my left leg and foot without ever knowing what was going on. I persisted and finall found a doctor who was able to diagnose it. I thought I would suggest that you try out Tommie Copper compression products – they are great! And since you have said you like yoga pants, you might want to check out thier selection (they offer plus sizes).
In one word Sarah, you are: “Beautiful.”
Sarah, I too have lipedema and lymphedema. My body closely resembles yours. Most of my weight is in my butt, hips and legs. I live in South Florida, you mentioned in a previous post that you found a lipedema/lymphedema specialist in Miami. I would love to find out their name. I am currently looking for a local doctor that recognizes this condition. I appreciate you and all you do to make everyone aware of this disease. Thank you so much, Linda
The doctor I saw at UM at the time was partially retired 10 years ago not sure he still in practice but there is a doctor at Cleveland Clinic Weston, Dr. Celestin. http://my.clevelandclinic.org/staff_directory/staff_display?doctorid=8478