Thank you thank you thank you!!!! This is one of the most relatable pieces I have ever read on living/training with this condition. Infact, I have tears in my eyes because it is the first piece that resonates so strongly. I could have written this myself! I have spent near to 40 years trying to find what works for me and I’ve been doing it alone, because clinicians were not interested or willing to believe I was doing all they instructed, but it was not working. So I stopped asking. I stopped asking because their responses were destroying my mental health. To this day I am reluctant to seek support because of past experience This is such important work and I implore medical people to take us seriously, to believe us, to truly listen. Not for me, but for the young ladies who come after me, so that they don’t need to go through the isolation, misunderstanding, misdiagnosis, dismissiveness. Living with this condition and trying to find guidance and support feels truly like trying to find the exit in a maze with a blindfold on. I truly feel the psychological impact this condition has is as devastating as the physical impact it has. It would be amazing to see similar work on the mental anguish many of us live with due to dealing with a medical condition society does not recognize and medical professionals dismiss. Again, thank you for this work.
Reading all of your comments.. <3 The physical symptoms are one thing. The psychological load is something else entirely.. What you describe about stopping asking for help because the responses were harming your mental health is serious... When clinicians dismiss lived experience, people withdraw. That has long term consequences. The maze with a blindfold image is accurate. Many women are navigating this without clear guidance, and that isolation leaves a mark. That's why I started LipedemaScience!!
Eg er heilt enig i denne kommentaren. Denne teksten er så relaterbar og viser så godt korleis det er å skulle trene og restituere med lipødem, som er eit heilt anna kapittel enn for dei som ikkje har lipødem. Takk Carina! Takk! <3
You are right.. Training and recovery with lipedema is not the same as for someone without it. Applying generic fitness advice without context creates frustration and self doubt!
I am an EFT tapping practitioner and I have spent hours and hours working on beliefs around self-worth and the stories of work hard = perfect body, people’s judgement, and my own - especially after realising, “oh, it’s lipoedema.”
The noise and the emotion have calmed right down - I’ve also done this work with others.
Like bathing though, mindset and self-love / worth need to be dipped into regularly or they begin to stink, ever so subtly, and every now and then you get a ferocious whiff and are left stunned where it came from and back to work you do dissolving some outdated comment someone passed.
I think that’s because we are constantly fed and have been conditioned with imagery and marketing everywhere devoid of genetics and portraying 1 body type as optimum and also shopping for clothes experiences that are not always, positive.
The mindset work matters! The beliefs around worth, effort, body shape, and judgment run deep. And they do not disappear once you understand the diagnosis. They need maintenance. We are constantly exposed to narrow body ideals and simplistic messaging about calories and discipline. That conditioning does not vanish overnight.. I agree that the mental impact needs more attention. The psychological burden of living with a misunderstood medical condition is real!
This is so thorough. Thank you. I am walking 4-6 times a week and want to move to 2 lots of strength work as well add was unsure on light weights more reps or heavy weights less reps, and have realised it doesn't matter. I haven't been to the gym for 2.5 decades because I lost hope. Train hard enough for a less mills body, implied I wasn't training hard enough, I was lazy. I gained muscle but still felt I had fat on top of it - despite diet and doing more cardio - all weight training I felt did was add bulk, especially in arms. I also find the heart rate thing a fob off. Train in zone 2 - well I'm in zone 3 walking up hills and still talking so ??? Now I just walk - whatever. Movement is movement.
I get why you lost hope with the gym. What you describe, building muscle but still feeling like there is a layer that does not shift, is something I hear from many women with lipedema. That is not laziness, and it is not a character flaw. On strength work, honestly, the exact rep range is less important than doing it consistently and choosing a load you tolerate and recover from. Light weights and more reps can work, and heavier weights with fewer reps can work too.
… And yes, heart rate zones are just rough guidance. If you are walking hills, still able to talk, and it feels good, that counts! Movement is movement.
Thank you thank you thank you!!!! This is one of the most relatable pieces I have ever read on living/training with this condition. Infact, I have tears in my eyes because it is the first piece that resonates so strongly. I could have written this myself! I have spent near to 40 years trying to find what works for me and I’ve been doing it alone, because clinicians were not interested or willing to believe I was doing all they instructed, but it was not working. So I stopped asking. I stopped asking because their responses were destroying my mental health. To this day I am reluctant to seek support because of past experience This is such important work and I implore medical people to take us seriously, to believe us, to truly listen. Not for me, but for the young ladies who come after me, so that they don’t need to go through the isolation, misunderstanding, misdiagnosis, dismissiveness. Living with this condition and trying to find guidance and support feels truly like trying to find the exit in a maze with a blindfold on. I truly feel the psychological impact this condition has is as devastating as the physical impact it has. It would be amazing to see similar work on the mental anguish many of us live with due to dealing with a medical condition society does not recognize and medical professionals dismiss. Again, thank you for this work.
Reading all of your comments.. <3 The physical symptoms are one thing. The psychological load is something else entirely.. What you describe about stopping asking for help because the responses were harming your mental health is serious... When clinicians dismiss lived experience, people withdraw. That has long term consequences. The maze with a blindfold image is accurate. Many women are navigating this without clear guidance, and that isolation leaves a mark. That's why I started LipedemaScience!!
Eg er heilt enig i denne kommentaren. Denne teksten er så relaterbar og viser så godt korleis det er å skulle trene og restituere med lipødem, som er eit heilt anna kapittel enn for dei som ikkje har lipødem. Takk Carina! Takk! <3
You are right.. Training and recovery with lipedema is not the same as for someone without it. Applying generic fitness advice without context creates frustration and self doubt!
Yes, the mental impact.
I am an EFT tapping practitioner and I have spent hours and hours working on beliefs around self-worth and the stories of work hard = perfect body, people’s judgement, and my own - especially after realising, “oh, it’s lipoedema.”
The noise and the emotion have calmed right down - I’ve also done this work with others.
Like bathing though, mindset and self-love / worth need to be dipped into regularly or they begin to stink, ever so subtly, and every now and then you get a ferocious whiff and are left stunned where it came from and back to work you do dissolving some outdated comment someone passed.
I think that’s because we are constantly fed and have been conditioned with imagery and marketing everywhere devoid of genetics and portraying 1 body type as optimum and also shopping for clothes experiences that are not always, positive.
Yes for the mental anguish stats.
The mindset work matters! The beliefs around worth, effort, body shape, and judgment run deep. And they do not disappear once you understand the diagnosis. They need maintenance. We are constantly exposed to narrow body ideals and simplistic messaging about calories and discipline. That conditioning does not vanish overnight.. I agree that the mental impact needs more attention. The psychological burden of living with a misunderstood medical condition is real!
This is so thorough. Thank you. I am walking 4-6 times a week and want to move to 2 lots of strength work as well add was unsure on light weights more reps or heavy weights less reps, and have realised it doesn't matter. I haven't been to the gym for 2.5 decades because I lost hope. Train hard enough for a less mills body, implied I wasn't training hard enough, I was lazy. I gained muscle but still felt I had fat on top of it - despite diet and doing more cardio - all weight training I felt did was add bulk, especially in arms. I also find the heart rate thing a fob off. Train in zone 2 - well I'm in zone 3 walking up hills and still talking so ??? Now I just walk - whatever. Movement is movement.
I get why you lost hope with the gym. What you describe, building muscle but still feeling like there is a layer that does not shift, is something I hear from many women with lipedema. That is not laziness, and it is not a character flaw. On strength work, honestly, the exact rep range is less important than doing it consistently and choosing a load you tolerate and recover from. Light weights and more reps can work, and heavier weights with fewer reps can work too.
… And yes, heart rate zones are just rough guidance. If you are walking hills, still able to talk, and it feels good, that counts! Movement is movement.