“My whole life I knew there was something off about my body. It took me 25 years to finally find out what was wrong. Since I was young, I have always been unusually overweight and never understood why. My family isn’t known for anyone being unusually overweight and I was always very active as a kid. I remember being in 3rd grade and a classmate saw my mom and dad drop me off for school. She asked me, ‘Why are you fat and your mom and dad aren’t?’ It was so hurtful and I didn’t have an answer for her. I was bullied most of my childhood like most overweight kids but tried my hardest to fit in. My parents took me to the doctor to try to figure out what was wrong, they always watched what I ate and I was very active, so they also knew something was off. The doctors tested my thyroid, but it was perfectly fine. They always gave the same answer, ‘She just needs to lose weight,’ and gave a diet to follow. I lost a little but it would always come back and it would come back with a vengeance! I swear if I lost 10 pounds, when I gained it back, it would double!
When I reached high school I started playing Field Hockey and noticed some weight starting to come off again. I was so excited but the more I exercised the more pain I got in my calves and my shins. I went to the doctor thinking I had shin splints or something but all the doctor could tell me is, ‘the extra weight on your legs could be causing the pain. If you lose more weight, the pain will go away.’ Then proceeded to give me a diet to follow. I ended up quitting Field Hockey a year later due to the pain being too much to handle. I noticed if I didn’t exercise, I didn’t have pain – so I did just that.
As I got older and graduated high school, I gained more weight. But the weight gained was always in my lower half. I noticed I had the biggest butt out of all my friends and all my family. It got me into a lot of embarrassing moments. I remember looking at a photo taken at Thanksgiving. It was all of the girls in the family and my butt stuck out like a sore thumb! That was so embarrassing. There was another time I was taking pictures at a 3-year-old’s birthday party and these kids, probably 6 or 7 of them, start pointing at my butt and laughing. I did everything I could to dress in a way that hid my butt or minimized it in any way possible. I was very self-conscious because I was made a joke of something I didn’t know how to control.
The hardest one has to be the wedding of an old friend. We were getting fitted for dresses and this certain bridal shop didn’t have mirrors in the dressing rooms, so you can’t see how terrible something is going to look before you come out. Well they didn’t really have my size. I tried on a dress that was close and of course I was falling out of it and looked terrible. I had to go out in front of everyone and show them this terribly fitting dress. It felt like an episode of ‘Mean Girls’ with the look on the other girls’ faces, especially the one who was supposed to be my best friend. She turned to her coworker, who had a picture-perfect magazine body, and said, ‘I wish everyone just had a body like you.’ I remember leaving and crying in my car. Needless to say, we aren’t friends anymore.
Fast forward to around 2012, I started to notice my feet swelling a lot. It was getting so bad that I couldn’t go a full day without them swelling. I went to the doctor and they told me because of my weight I was just retaining water and to just elevate my feet. Well I knew damn well that is wasn’t my weight and got so fed up and didn’t go back to the doctors about it because they didn’t have any answers for me. Every answer they ever gave me was ‘lose weight’ without ever considering there was actually an issue.
3 years later I got into a car accident. My legs hit the dashboard very hard and left what the doctors first called a ‘contusion.’ My right leg got hurt the worst, I could barely walk for a week because it was so swollen from the ‘contusion.’ I couldn’t bend my knee. After countless doctor appointments and 5 ultrasounds to make sure I didn’t have a blood clot, just to be told it would ‘go away over time,’ my ‘contusion’ never went away. I even went to a vein specialist and they just tested the circulation in my legs and said everything looked fine and that the varicose veins that had started to show on my legs due to the ‘contusion’ was just cosmetic. I ended up just dealing with it, some days worse than others. I started noticing my calves getting bigger and bigger, especially the right leg. They would swell REALLY BAD on long car rides. Out of fear of just wasting my time and being fat shamed again at the doctor’s, I didn’t ever get it checked out.
About 2 years ago I started having foot pain and went to the foot doctor to get it checked out. Turns out they wanted to give me a foot brace to wear at night but the biggest one they had didn’t fit my calf. Embarrassed, I explained to the doctor that my calves have always been abnormally big and they have gotten bigger since my car accident. He made a face and really seemed like he was thinking hard. He said he wanted to put me in contact with someone he thought could help. She was a rep from a company called Tactile Medical. She came to my house and explained to me that she believes I have something called Lipedema. I was confused at first and took it with a grain of salt.
I went back to the doctors but this time it was different, I went to a new doctor I have never seen before and she truly led me in the right direction! I explained EVERYTHING to her, and she told me she wanted to send me a vein specialist. I told her I had already been to one and they brushed me off. She asked me which vein specialist I saw, and I explained. With a straight face she said, ‘that’s why.’ Apparently they were more of a cosmetic vein specialist. She sent me to a different vein specialist and my whole life changed!
After the vein specialist ran some tests and asked me questions, I got diagnosed with Lipedema and Lymphedma, also known as Lipolymphdema. Turns out Lipedema is an immune deficiency disease with your lymphatic system. It is also known as the ‘fat disease.’ What happens is your Lymphatic system pushes out lymph fluid from your heart, then it goes throughout your whole body, then is supposed to go back to your heart. Well, my lymphatic fluid gets blocked up and never goes back to my heart. When that happens, it just sits and has nowhere to go and then goes into your fat cells. Once the fluid is in your fat cells it damages those fat cells, and once the fat cells are damaged, they cannot be burned by diet or exercise. Late stage Lipedema then causes Lymphedma, which is when the lymph fluid than starts to store in your feet and legs.
Once I was diagnosed and then told by the vein specialist that ‘there is no cure,’ and not a lot of research on Lipedema has been done, I completely CRUMBLED! I was bawling my eyes out in the doctor’s office and I remember saying, ‘I will never wear compression stockings every day!’ For a week I had a whole pity party for myself! The more I googled it the more I scared myself. I just thought, ‘Why me?!?’ Then it hit me! I have ANSWERS!!! FINALLY!! The biggest relief was realizing ‘it’s not my fault.’ The more research I did and the more I learned about lipolymphdema, the more everything in my life made sense. Lipedema also causes a lot of pain especially when you exercise, and my butt is so big because of LIPEDEMA!
Now that I have answers, I know what I need to do to get better. That gave me power again over my body! That power has now turned into confidence! I decided to start an Instagram page in hopes to educate myself more on Lipedema/Lymphedma and also bring awareness to it. I have found an amazing community of people on Instagram who are going through the same thing and have learned so much from them. In June, I started my lymphedma therapy and for the first time. My ‘contusion’ has gone down. Turns out it’s not a ‘contusion’ at all. It is a lot of scar tissue and come to find out, lymph fluids LOVES scar tissue. So if you have scar tissue anywhere, it will swell a whole lot easier. Not only have my legs gone down in size but so have my feet! I used to dread shoe shopping but this year is the first year shoes actually fit!
My goal now is to keep educating people and to really shed a light on this disease. I also want to help other people struggling with weight issues and with their confidence. I know what it is like to feel completely self-conscious about your body and not love yourself. I want to show people it’s okay to love yourself, flaws and all! My next step will be to consult a Lipedema specialist and look into liposuction surgery since that is the only way to remove Lipedema fat. Thank you for letting me share my story with you.”
This story was submitted to Love What Matters by Maranda Kirk of Maryland. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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