Hi friends!
I have a question for you today. Will you share your story so we can get the word out about lipedema? (If you don’t want to read the full blog, I have an ask for you at the very end of this.)
Why would I want to put myself out there, you say? Because, frankly, there isn’t enough information out there yet about lipedema. For example, Amazon is touted as the second largest search engine in the world, only behind Google. When I do a search on the word “Lipedema,” I get only 583 hits, and many of these are for items unrelated to lipedema but may mention it in a book, etc.. Compare this to an amazon search on, “Heart Disease,” and I get more than 30,000 hits. We need more publications, social media posts, and shares so people know it’s really a thing!
Because once more doctors, insurance companies, and providers of services and products are aware of lipedema as a real condition, the easier it will be to get early diagnoses, treatment, and services or supplies made for others with legs like ours. And also, the more our word is out, women who are just starting their search to figure out what’s going on with their legs, will be able to find information and realize they are not alone. It’s important to think beyond ourselves to save our daughters and sisters from going through what most of us have experienced.
Many, if not most of us who have lipedema and who are searching, desperately, for ways to get our legs back into a non-painful, non-growing, controlled state, have experienced these things:
- wondering what was wrong with us because our legs wouldn’t stop growing, or looked different than other ladies’ legs
- having doctors who weren’t aware of our condition, sometimes diagnosing us with obesity and assigning us to diet and exercise
- doctors who are not sensitive to the psychological damage that we’ve already experienced because of lipedema, sometimes even making it worse by not believing us, or even by degrading us
- going for extended periods of time while the disease progressed because we and our doctors didn’t know where to start
- struggling to have insurance coverage because lipedema is not a covered condition, or because knowledgeable doctors are not in network
- having to travel very far distances to receive treatment because it is not available locally
- not having fashionable clothes, fitting clothes, or being able to wear shoes because there isn’t market coverage for our specialized needs
- giving up, losing mobility, and letting the disease progress because they are done being fat shamed, or have come up to dead ends to find treatment. Yes! It does happen that untreated lipedema can result in becoming bed bound in some cases!
Ways You Can Help
Social Media Sharing: Thank goodness we have a handful of ladies who are very open to sharing their pictures and story openly on social media forums (search for Lipedema on Instragram, for example). I am one of those folks, but am most certainly not the person with the most likes or followers. There need to be more. Not everyone wants to be like the influencers and just ‘put it all out there.’ But you don’t have to be an influencer, or even show your face to make a difference. Do what is comfortable for you.
(One note about social media sharing (let’s not make it awkward). There are two types of sharing. There are the reveal all shares that attract folks for more than lipedema awareness posts, maybe a little sexy, maybe showing a whole lot. And there are more regular type posters (kind of like I do), that really are just for information sharing and awareness. Belive me when I tell you I’m not turning any kind of a profit or am sponsored by any companies (ha!), but I don’t judge or care if anyone else is – go for it. I’m gonna say either or other types of posts for awareness are fine, good, wanted and needed, becaus they all share awareness and help normalize the fact that there are MILLIONS of us out there, but don’t tell yourself you’re not going to help because you’re not doing those sexy photos. Both types are useful. Even I (whom you know if you follow my youtube, especially, don’t always wear makeup or fix my hair), occasionally get followed by straight up creepers who have strange fetishes, and I frankly, just ignore them. Just know that regular women like us, are learning from our posts.)
Write People in Power: Whether it be your insurance company, your legislator, or the American Medical Association, write an email, send a snail mail, or call. Ask for more classes, more education requirements, and more awareness shared about lipedema. Ask for legislation requiring coverage.
Continue to Advocate with Your Medical Team: Bring in those flyers and brochures from the Lipedema Foundation to all your medical appointments. Heck, leave a few in the waiting room.
Advocate for Yourself and Don’t be Afraid to Fire your Doctor and Find a New One: If you have a doctor who won’t listen, insists it’s just obesity, degrades you, or disarms you, get a second or third opinion, then fire them. Move on. And if you’re feeling extra brave, tell them why. You may have to write a letter because it’s hard, but do it, so they can learn and improve too.
My Ask – Can I Help Share Your Story?
Lastly, one way you can help is to contribute to ongoing projects sites, books and youtube channels, etc. I’m working on several media items right now, and I have an ask. Would you like to share your story that I could publish? Today I’m looking for stories on these topics:
- My lipedema symptoms and how I figured it out
- How having lipedema has affected me phsychologically
Instructions for Submitting
- Submissions are due by 11:59 PM central time, Saturday February 5th, 2022.
- Send an email to legslikemine@gmail.com with the subject line: Media Submission
- Include up to 500 words for either of the subjects in the body of the email. You may attach up to two pictures.
- Please include your physical mailing address, email and telephone number – these won’t be shared or added to any mailing lists, but I will reply. Also, please include your tshirt size.
- If accepted to be used on any of my social media feeds, or to be included in my upcoming book (release date April 20, 2022), I will send you a copyright release form that will need to be returned to me prior to your information being shared. Also if accepted to be used on any of my feeds or in my upcoming book, I will also send you a free LegsLikeMine tshirt (limit one, sizes up to 5xl)! This isn’t a contest – I may chose some, all or none of the submissions to be used based on my review. So do your best so we can REPRESENT!
I hope you’re interested and willing to share for the sake of helping ourselves and the other women in the 11% who have lipedema. Let’s make the world better for all of us!
