Living with lipedema || One size doesn’t fit all

Women with lipedema have one common denominator and that is the chronic disease lipedema. We all have sick fat cells that cause us all discomfort. Each of us experiences this in our own way. Although we have a common denominator, our bodies are all different. Each of us has our own set of genes, a body that reacts in its own way, our own emotional baggage and scars, and our own coping mechanisms for dealing with life. We all learn to deal with life, our body and lipedema in our own way. We all have our own way to go and that ensures that it is not a one size fits all route. What works for one may help another, but it won’t work for all. We are all different despite having lipedema.

Support each other

For a long time I felt very alone when I didn’t know what was wrong with my body. A world opened up for me when I was diagnosed with lipedema and discovered that there was a whole community of ladies who also had lipedema. For the first time I saw bodies that resembled my body. For the first time I saw legs that looked like mine. For the first time I read the stories and experiences that resembled my story. For the first time I felt recognition and knew I was no longer alone. I knew there were more women like me.

But not knowing what was wrong with me for so long had taken a huge toll on my mental health. I was incredibly insecure and desperate because all I wanted was an instant solution that would turn my legs back to normal. I clung to the success stories and my insecurity made me do exactly what the successful person did. I just forgot that my body was my body and has its own manual. But my desperation was so great that I just tackled everything and wanted to do it. The community became a toxic environment for me that only dragged me down even more in my bad moments. It wasn’t the ladies in the community but it was my mental health and my backpack that took care of that and I was susceptible to everything.

Your own route

I’ve been in the community for many years now and I know exactly when to take a step back to monitor my mental health. I sometimes see reactions passing by that trigger me. Ladies who have found what works for them and then give advice based on what has worked for them. For example, I was recently told to look at the positive side because that was what the lady in question did. I only applaud you for finding what works for you, but maybe we could be a little more considerate of the others and give advice in a milder way. It’s more of “this worked for me and maybe this can help you” instead of the “you have to do it this way because it helps”.

I only share a small part of my life with lipedema online. I only share a small piece of my mental health online. I only share a small part of my own path, and what I do to stay standing, online. I don’t show a large part either and that’s my choice. Over the years I have come to realize that this is my way and I myself learn by trial and error what is good for me and what benefits me. I no longer want to mirror myself to others because I am insecure and desperate. I want to find out for myself what I need. I want to encourage everyone to follow their own path and find out what you need. And if you already have, then I’m your biggest cheerleader and I’m cheering for you. But shall we try to be a little kinder to each other in advising and taking into account the fact that we are all different?

Take care!


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