We spend a lot of time talking about how important staying active is with Lipedema, and it is the main focus of the support group and work I have been doing since 2013. But there is a huge emotional/mental health component of living with a chronic illness, which is equally as important to focus on.
The Living with Stage 3 Lipedema live series I started with Crystal from CFitRevolution has been focusing on the emotional/mental health side for the past several months because it is a topic not really addressed in the community much.
It is easy to understand why it is not addressed, it is challenging living with a chronic and progressive condition; spending your life always pushing forward, maintaining self-care, staying active, and trying to stay positive in your efforts to slow progression. It is a daunting task.
If we think too long about the journey we are on, we can stall. We can start down that path of what-ifs, we can focus on not seeing improvements (even if we can feel them), we can let the exhaustion set in, and it all can build up and take us out emotionally. So, we tend to not focus on those things.
But by not discussing them, we can live in silence alone, and become overwhelmed and that is a scary place.
The trick is to talk about them, acknowledge the emotions, and work on them, but don't live in them. Finding ways to slowly release the pressure building up along the way. It doesn't have to be all or nothing. We go back to our motto of all of something.
Lately, I've been off. I chalked it up to regular personal life stuff, work stuff, new year stuff, pandemic stuff, etc. All of which are part of it. But I also thought maybe I'm thinking about the emotional stuff too much, and that itself has me staying in the emotional place too long?
We have learned so many good tools and tips the past few months during the lives, from our special guests: Linda-Anne Kahn, Beth Sabo Novik, and Karen Windsor. Each sharing ways to help address the emotional side of living with a chronic illness. Click their names to be taken to the replays.
This morning it came home for me, an understanding into my "feeling off" emotionally. I miss my friends that I have lost over the years, fighting the progression of their Lipedema.
One friend, Katia Page, AKA "The Lipedema Queen" (that name suited her to a T), I met in 2014 at my very first FDRS Conference. She was amazing, had just had one of multiple surgeries for her Lipolymphedma and then got in a car and drove to DC just to be at the Conference. We even walked the runway, showing off the latest in compression that Yvonne Russell brought to the conference.
Katia was a huge advocate of spreading awareness of Lipedema, the importance of staying active, and feeling beautiful. She was gorgeous, and her laughter could melt away any worry you might have.
She would reach out to me privately and we would talk about such amazing ideas she had on spreading awareness. . .
- A fashion queen, she reached out to stores to get donations for Lipedema patients, so they could feel beautiful in new fashionable clothing, she had photographers come to every event and have fashion shows, and she even setup makeovers with Sephora.
- A fitness queen, she was always in her favorite New York Sports Club pool, and in 2017 invited several of us to join her for an AquaRun 1K event. I had no idea of what that even looked like, but she did - and it was fun. She was always fun.
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| The Lipedema Queen’s - 2017 AquaRun Warriors |
As I make my plans to travel to the 2022 FDRS Conference, I can hear her laughing from up above, "knock their socks off girl, you got this". Katia would not want me staying in the emotional place too long, she would want me fighting!
I am looking forward to the conference, I cannot describe the feeling of walking into a room full of people who 100% understand what you are going through. I am planning on loads of hugs from friends I've only spent time with over zoom. It will be absolutely amazing.
I am honored to be a speaker. To share my patient perspective. But it comes with great responsibility, too. Sharing what I have learned over the years, and what (who) I have lost, a delicate balance of physical and emotional healing.
But I know I have angels on my side, watching over me, over us - cheering us on! Together we are stronger. Hope to see you in Cleveland, and beyond!
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