Living with lipedema, as with the management of any chronic condition, presents physical, mental, and emotional challenges.
Physically, my arms and legs are heavy and extremely sensitive, the excess weight causes pressure and pain in my joints and tires me out very easily.
Mentally, I struggle with the reality of having a progressive condition to which little is know, and to which few effective treatment options exist and are not readily accessible or require insurance appeals to get covered.
Emotionally, I live in fear of when my next bought of cellulitis will occur. I am judged and stereotyped based on my appearance. I have been discriminated against in the workplace, and been denied proper medical treatment because of weight bias and stigma.
I often ask WHY ME?
A few months ago I made a pretty risky life decision, but one I felt was best for my overall health. I have returned to college and revived this blog and focus more on advocacy. Sharing my story publicly opens me up to comments and feedback, I have been warned the internet is can be a not so nice place. I know this…but I also know that awareness needed and I must continue speak up.
But WHY ME?
A college friend sent me this message a few day ago that answered that question:
“Though you’ve always had a voice, we are both great talkers. I believe you have truly and finally found YOUR voice. I think you’ve landed and are doing exactly what you should be doing. Perhaps you were given your conditions so that you can use your ability to talk-and unabashed ability to speak your mind so that those who aren’t as vocal (and I mean that in a great way) have someone on their side to encourage them to speak up when things go wrong.”
I myself am a long time victim of Lipodema. But untill a few months ago, I had no idea what it was called, or that there was as many woman with the same problem as mine.
When my mother in law showed me your article in a magazine, i went home and cried, because The INLAWS finally believed me that I was not causing my size issues. I try not to let them or anyone else get to me but being big without a reason is hard on the body mind and soul, my best friend and Manager, for my small modeling career made me feel good about myself and reminded me that beauty is in the eye of the beholder, and only skin deep. Now I plan to be an advocate for all the woman out there who suffer from this disease.
Thank you for being brave and speaking up, it has encouraged me to do the same.
I have lipedema, lymphedema, and venous disease recently diagnosed. Until last year when I found out about these conditions I thought I was a fat loser. My sis-in-law called me a fat pig. I spent my whole 67 years of life feeling bad about myself. Just the diagnosis, knowing it was not my fault–I cried. Now I am feeling better about myself and learning a lot! What a difference it has made in my life!