Wonder Wednesday: Why did it take so long for a diagnosis?
This weeks Wonder Wednesday question is: Why did it take so long for a diagnosis? You seemed to suffer for so long…
*** Possible trigger warning: fat shaming, Dr’s not believing patient***
I wish I had a better answer other than doctors just don’t know about it. But sadly, at least in my case, that seems to be the reason why I didn’t get a diagnosis till I was in my late 20’s. Actually the more I think about it it’s that not enough people, in general, know about it.
If someone in my family had known they could have spoken up and demanded doctors to look into it for me. Instead, I grew up hating and not trusting doctors because every single doctor appointment led to a lecture about my weight. Sometimes the doctor blamed my parents. Sometimes they blamed me. But during all the blaming and shaming I was never once given a solution.
I remember the doctor asking me around the age of 11 if I was lying to my mom about how much I was eating. I said no, I don’t like most foods so even at friends’ houses I didn’t typically eat. He turned to my mom and said “I don’t believe her. She has to be sneaking food and feeling ashamed about it.” My mom snapped at him saying how she was the one buying my food and I had no access to get junk on my own as I was too young to drive anywhere and we didn’t live within walking distance of a store. The doctor huffed and wrote down “overeater both patient and mother in denial”. In my early 20’s I went to a clinic while living in Queens for a sinus infection and the doctor brought up how I needed to lose weight. I snarked back with “Oh, are my sinuses packed with fat is that why I can’t breathe? He wrote me a prescription and walked out. When I was pregnant with my son in 2007, my dr at the time took 22 tubes of blood and got angrier and angrier as each test result came back clear. He was convinced I had to have something wrong with me because I was fat. I had to beg him for a referral to a physical therapist for my Lymphedema. He told me I read too much online. I made a deal with him that he could tell me “I told you so” if I didn’t have lymphedema. The look on his face when I waddle back into his office with my legs wrapped was great. But even as great as the first PT for lymphedema was they never mentioned to me that I had Lipedema. It would be another 4 years before I found that out.
It was so weird to go through years and years of your life being told “Just lose weight” but not given any solution. Yet at the same time I was also being told by family and friends “you don’t eat, you should be a twig” I ended up putting a lot of pressure on myself, sometimes without realizing it. I barely like food but then would feel guilty for eating the things I did like. It makes you start to doubt yourself and how you’re living. It makes you think things like “maybe I am eating too much, what’s the right amount??” or “maybe I should be moving more.”
Not being believed by professionals that are supposed to help you, leads to signs and symptoms being overlooked. I downplayed the pain in my legs, feet, and arms for years because I had been told more times than I could remember “well fat takes a toll on the body so there is bound to be pain”. Constant dull pain like your legs are just trying to get your attention isn’t normal. Feeling like your skin could pop like a balloon from the tightness isn’t normal. Complaining of painful beads under the skin is not normal. But I led myself to believe that this was just how my life as a fat person was going to be since everyone wanted to judge no one wanted to help.
If I had known then what I know now about Lipedema, I could have demanded doctors to look into it. I could have spoken up and demanded more respect but I was young and took whatever insults disguised as medical advice they dished out. I was raised that doctors were these amazing people that could fix anything but in reality, they are human and trained for a job. I have since started to use my redheaded fierceness to not only be my own voice but share what I’m learning along the way. I’m hoping it spares at least one person years and years of not being diagnosed.
The medical system failed me so many times for so many years. But the question I’m left with is “Was it the doctors failing me or did medical school fail them by not training them on a condition 1 in 11 women have?”
Cara, thank you for sharing your story. I feel your pain. My insurance sucks also. I take care of my disabled adult son and I can’t afford being disabled because of this disease. I decided to take my future in my own hands. I got a loan, hopefully will cover all the surgeries I need. I’m 58 and I want a quality life. I had stumbled across Dr Jaimie Schwartz by accident. In 2013 I had weight loss surgery which helped me lose 57 pounds but it just stopped. No matter what I did it wouldn’t come off. During the beginning of the pandemic I was trying to Google if the surgery somehow caused me to not be able to loose any more weight. I gained, from 2013-2020, 24 pounds of what I lost. The doctors telling me I need to exercise more and diet more. I came across lipedema and the photos looked just like me. After weight loss surgery it appeared my weight was shifting from my top half to my hips and legs. I felt like a melting candle and I told the doctors that. But, of course, I was told I wasn’t dieting or exercising right or enough. It was like my HMO had a gag on the word Lipedema. No one wanted to talk about it and told me to diet and exercise. DR schwartz web page that I was looking at and I was able to text with someone. Sort of like a car dealership. I was skeptical at first and it took me a couple visits to the website and I went ahead and had a virtual appointment. I tooknthe pictures and filled out the questions. After the virtual visit I went to see the doctor in person. He is so kind and assured me I was not at fault and there was nothing in the past I could have change that would have change today. He made me cry in relief. I tried to work with coverlipedema.com to get my insurance to cover. I was having no success except them causing me emotional stress. Now that I have taken control I am less stressed. I’ve had two surgeries,so far, and pain is better. I can walk longer and easier and go up stairs easier. I haven’t fallen since the first surgery. I felt so bad one day because I fell on my dog and I know it hurt her. It hurt me. I’m so glad you are able to get treatment earlier in age than me. My mom had this but was never diagnosed. She would complain about the pain and about walking. She was afraid of stepping on a Crack in the road and falling. I didn’t know then what she was really experiencing. I do now. She died not knowing. I pray it skips my daughter. Thanks for allowing me to comment. I wish you the best of luck on all your surgeries.