MY EXPERIENCE is JUST AS VALID as YOURS or anyone else’s. It is NOT “fat shaming” to share that dietary changes helped me. I don’t care if someone is fat — I myself am fat and I don’t feel in any way shamed because of it.
I love and accept myself and encourage others to do the same. My body is a battleground. I have a foot long hole in my chest where my right breast used to be. You can make out the outline of my ribs through the thin skin that covers that area. I have extensive scarring covering my entire right thigh. My hair is very thin now due to the cancer treatment. Nevertheless, I love and accept myself, and so does my boyfriend, who adores me, and so do my friends. Those that judge me based on my appearance — I don’t need them in my life and don’t care what they think. I remember shortly after my surgery, I was traveling in Hungary and went nude in spas. Of course people noticed my scars, but that didn’t stop us from making friendly conversation and relating as human beings. I’m sorry if others feel ashamed of their bodies but that is not MY problem, and it doesn’t have to be yours unless you let it.
Shannon is honest and shares her experiences and this is valuable. But other peoples’ experiences are also valid.
The simple FACT is that my lymphedema is getting BETTER. The circumference of my arm has gone down significantly since I started doing exercises, self-massage and made dietary changes. I am extremely happy about this and have the right to share my experience.
It’s too bad that you seek to invalidate my experiences, but hey, that’s not MY problem. I am not invalidating YOU, or Shannon. Obviously lifestyle changes are not the answer FOR HER, but they ARE helping ME.
Could dietary changes help a statistically significant number of lymphedema cases? There is some intriguing research. Just to cite one example, in the Journal of Veins and Lymphatics, from 2019, volume 8, an article by Cavezzi, Urso, Ambrosini, et. al., discusses the benefits of polyphenols as anti-inflammatories for lymphedema patients.
As a cancer survivor, lifestyle changes helped ME to survive two aggressive cancers so far — a type IV and a type III. I am now successfully overcoming aggressive cancer for a third time — metastatic brain and lung cancers. Doctors told me back in 2004 that I had an 85% chance of dying within 18 months, and one doctor told me my prognosis was about 6 months. Yet I’m still here and going strong — and I do credit the lifestyle changes I’ve made. These experiences informed my fight against lymphedema.
If you think encouraging people to make lifestyle changes to combat chronic disease is “ableist” — well, way to go putting labels on people.
I was not trying to discourage anyone or shame anyone by sharing my own experiences. Perhaps you seek to silence me by labeling me? If so, shame on you for that. I have never tried to silence anyone, even when they disagree with me because I don’t invalidate other people.
Some people find my posts encouraging and helpful. I have had people tell me I’ve inspired them, including medical professionals at the hospital I go to for my cancer treatments. I have had nurses tell me that having me as a patient has brightened their day. This makes me happy.
At the same time, I get that one can’t make medical decisions based solely on anecdotes. However, anecdotes can be the starting point for conducting real research and in fact, that is often what inspires scientists. As someone who conducted research at the Laboratory for Computer Science and the Artificial Intelligence Lab at MIT, perhaps I know a little something about how research actually works? One forms a theory, often based on a startling anomaly, and then sets up the experiments to test the hypothesis. An anecdote is not proof, but is often the inspiration that leads to proof.
Since making lifestyle changes has helped ME, it’s not unrealistic to think they might help others. Obviously everyone has to do their own research. I can point to some journal articles where researchers discuss dietary approaches that can alleviate some of the symptoms of lymphedema, including the article I cited earlier in this post.
My citing this research does not invalidate anyone else’s experience. Not everyone responds well to particular treatments. For example, for people with the type of lung cancer I have, there is a therapy that helps about 80% of patients. This therapy did NOT help me. Does that invalidate it for others? Of course not. One size does not fit all.
When it comes to dietary therapies as an approach to battling lymphedema — again, if you actually look up articles in respected research journals — some dietary changes can show an improvement in 60% or 70% of patients. But no therapy is universally helpful.
I respect Shannon enough not to try to push her to make lifestyle changes. She is an informed, capable adult and is making decisions based on what is best FOR HER. _I_ am doing the same. Instead of trying to invalidate me, maybe be happy that I’ve found solutions that work FOR ME.
