Hi friends!
Let me apologize in advance for this post. I’m trying to understand more about my community and I just can’t find the right way to say it. I promise I’m not an insensitive poop even though I can’t get my thoughts out right.
Recently I was interviewing one of lipedema lady friends in a very casual conversation. We were chatting about my crazy ideas and what not, and she offered to help me. She said, “I was in marketing. That’s who I used to be before I had late-stage lipedema.” It took the breath out of my lungs, although I think I did a good job of acting like it didn’t bother me. It made me question myself as well, who’s recently retired due to this condition not loving chronic stress. Am I who I used to be? Could I be?
What about you? How have you changed since your lipedema has changed or progressed, since joining our community of support, since knowing you weren’t alone? In some cases, it can be such an isolating disease, especially for our friends who have lost mobility, or become bedridden altogether. And for my friends who are in this place, I can’t even begin to understand, yet I still have hope that your lives have deep meaning, friendship and joy, and I also have hope that a treatment is coming for you. I know your lives have changed tremendously. What were you like before all this? What do you want us to know about that you that’s still inside but no one sees anymore?
In other cases, like mine, yes, I’ve changed. I’m definitely not who I was in a high management position, spending millions of dollars a year on giant projects, travelling all over to big cities, being in meetings all day long doing the work that was important to many, but that simply was not my passion. Now I wake up in the morning, excited to do what work I can get done in a day. And there’s never enough time to do it all. Even now I find myself writing this post at 8:42 PM because this random, deep thought just hit me.
I feel such a sense of comradery with the ladies who have the same condition as I do, and an incredible desire to help others who are at all stages in the journey. Whether it’s to console someone, give hope, joy, a laugh, or give information about what works for me to someone trying to find out what’s wrong with them, I want to be doing this life work with you, for you, and for me.
I’ve also physically changed. I, like you, spend a bit of time to do a ton to manage my condition each day. I swim, go to therapists, put on compression, pump, dry brush, do MLD, yadda, yadda, yadda. How I dress is totally different from government manager monochrome suits, business traveler, or hiker. But I’m comfortable, and now I have the joy of being able to wear fun prints and colors and even fabrics I felt I couldn’t get away with in my 28-year career. And I have the absolute thrill of getting to make outfits up for you all, and then the ton of fun I have reading emails, answering questions, and getting ideas from you all. I love it SO much!
Yes, I have constant knee pain and unpredictable dislocations, and I walk funny. Yet I get to spend time with one of my soul level friends, who I’m so lucky to have as my physical therapist because of it. And I have other things physically that go along with lipedema, and yet I’m given the gift of being on the Lipedema Education Group, where each week, I get to spend small group time with the best doctors, therapists, and researchers on a zoom call. They’re like-minded people who are purpose driven and kind, and we all desperately want to help the community heal in many ways. My mind is regularly blown by their collective brainpower, and love. How lucky am I? Seriously.
So I’m definitely not who I used to be. I miss my work friends terribly, but I am absolutely in love with the new work that having lipedema has presented me as a life path.
Tell us. Who were you? Who are you now? How have you changed and what good things have come from the changes? And finally, what changes are you struggling with and need support for? How can our community be there for you? Comment below or email me at legslikemine@gmail.com.
I hope this post brings about some healing and prompts for your own thought work for whomever needed it tonight. Until next time friends, be yourself and stay happy.
Susan
