I want to have a pretty tough talk about lipedema. This isn't meant to be a downer post (I have some positive news at the end, I promise!) but I do think a lot of people don't understand some of the difficulties that people with lipedema face and make assumptions as a result.

As such, I'd like to put some things in perspective.

More evidence is coming out that lipedema progression is tied to general weight gain. Some even speculate it's required, although we don't know for sure and need high quality studies on this.

If it's true, that's good news... Sort of. It means that with a lifestyle that helps prevent excess weight gain (possibly especially abdominal obesity), progression may be slowed or even stopped (depending on what's going on). 

But. Even assuming that's true (and again, major emphasis here, we DO NOT know, and it absolutely could be more complicated than that). 

That doesn't make lipedema 'easy'.

Consider, for example, how many times you've heard of people 'falling off the wagon' after successfully using diet and lifestyle to lose weight and keep it off. Yes, even keto!

They may sheepishly admit, for example, that over the holidays they gained 15 or 20 pounds. Then, they tighten up their diet again and it comes off.

Or, how many times people go through a stressful event - job loss, divorce, death of a loved one - struggled to stay on track and regained weight they'd previously lost. 

Now, consider with lipedema we have good evidence of lipedema tissue being diseased and progression involving fibrosis and scarring of the fat tissue. 

This is something a lot of people don't think about.

What evidence do we have of this? Histology studies on lipedema tissue showing increased fibrosis. Palpation showing nodular fat tissue in lipedema. And more recently, pictures from surgery on those with lipedema showing the scar tissue interlacing the fat.

Would I like to see more study being done on this to clarify the exact composition and extent of the scarring in fat tissue impacted by lipedema? Definitely. But, working with what we have here.

Some people find it hard to believe that people with lipedema could really disproportionately lose fat. The presence of fibrosis and scarring within the tissue makes this make way more sense.

Scar any organ, and it isn't going to act 'normal'. Fat is no exception.

More good news: Ketogenic diets seem to help reduce hip/thigh circumference more than other dietary interventions like calorie restriction! 

But often still not completely normalizing limb size (I would guess depending on how much of the tissue is heavily scarred versus not - again, more research needed).

So, even if "lipedema only progresses with general weight gain" is true (big if), this also comes along with another implication.

This would also imply that every time someone with lipedema falls off the wagon, or even just loosens up enough to gain weight - they also have to assume this may run the risk of causing progression. 

That means, diseased tissue increasing in their limbs that they may then struggle or fail to get off with diet.

Sometimes they gain a little weight, and they can get it back off again and sometimes.... it doesn't, even when their waist has returned to the size it was before. I've experienced both. 

Now, multiply that over a lifetime.

Every christmas. Every birthday. Every party. Every layoff. Every funeral. For the rest of your life.

Then, for some extra fun, throw in natural periods of weight gain many people with lipedema report leading to progression in some cases as well. 

Like pregnancy.

The available research on what may lead to progression of lipedema during pregnancy is... well, it doesn't exist. We don't know. We just know that it seems common.

That is what many people with lipedema have in the back of their head, every day. 

Every time they weigh themselves, every time someone offers them food that's off plan, and every time someone suggests people with lipedema need to just "not gain weight" and they won't have any more problems.

For the rest of their life.

The GOOD news (for real this time) is that science on lipedema is rapidly advancing. There is an entire community of scientists and researchers hellbent on figuring this out.

We have many interventions which can help reduce symptoms, awareness is increasing, and there is a community full of people to lend support and understanding.

I have no doubt that the more time that passes, the more that we learn, the more that we understand lipedema, the better we will be able to help people with the condition.

But keep in mind. If you know someone with lipedema, or want to pass judgements on people who live with it. Reread this post first.

Put yourself in the shoes of someone with this disease. Really try to understand.

Because it is, by no definition, "easy".

EDIT: And in case it's not abundantly clear, this doesn't mean people with lipedema can't do anything or they're on a path in which they have no agency!

In lipedema that is well managed, including a sustainable nutrition plan, quality of life can MASSIVELY improve AND be sustained over the long term. There are many in the lipedema community demonstrating this. 

Some who have regained mobility and substantially decreased pain through conservative treatments alone.

Do not confuse me saying "it's not easy" for "it's not WORTH IT".