Managing a chronic and progressive condition is challenging; the upside is you become the expert on your body (your own best resource).
The downside is you feel like a Guinea pig.
Self management is meant to have the patient manage their symptoms and treatments, checking in with a medical professional as needed (typically annually) to ensure things run smoothly.
But with Lipedema most medical professionals don’t know what Lipedema is, or worse, don’t believe us.
Over the years we have discovered we can all present with different symptoms and we can all respond differently to treatments tried. What works for one Lipedema patient may not work for another. Which amps up the challenge of living with a chronic/progressive illness.
My best advice is to start a journal (better yet a binder) for tracking your self management “experiments”.
Not only will it help you keep track of what your symptoms are, what treatments you have tried, and how your body responded, but also becomes something you take to your Dr. appointments.
For we also learn how to become our own best advocate. Standing up for ourselves and weeding out those who do not serve us well on our health journey.
JUNE IS LIPEDEMA AWARENESS MONTH - Spreading awareness is not only about reaching those who have the condition and may not know, but it is also for educating medical professionals and hopefully guiding research, and more.
Lipedema is best served when medical professionals and patients can come together and share experiences/knowledge to move the treatments forward and hopefully one day find a cure.
Knowledgeable medical professionals and researchers give us hope, and that is a huge help when living with a chronic condition.