Lipedema’s Long and Winding Road

When did your journey begin?  How did it begin?  Were you like most of us and had no idea that Lipedema existed and suddenly, through a variety of circumstances found yourself on a road with so many twists and turns that it left your head spinning?  Did you, or do you even still, find that the amount of information is overwhelming? Contradictory? Life-changing? Exhausting?

You, my friend, are on the exact same road as many of us. It is an exciting road that provides a lot of affirmation along the way.  It also has potholes, and you may fall into them if you are not careful.  We are a vulnerable group, because in most instances, and for far too long, no one has acknowledged what we have known in our hearts all along… that something is wrong with our bodies.

My journey began many years ago.  I first learned of lipedema the week of Christmas 2016., but I have lived with Lipedema since puberty. But let’s talk about the journey from the point that YOU KNEW FOR A FACT THAT YOU HAVE LIPEDEMA.  This doesn’t require a doctor’s diagnosis, because in most instances, we know the moment we read another woman’s story; hear her describe her journey; or see photos of body parts that resemble our own.  WE JUST KNOW.

From that point on I like to think of the journey as a road trip that, at times, you wish you could find the closest exit ramp, and at other times you’re happily seated on the bus with a group of ladies who are all singing the same song.  I’m pretty sure there are at least 5 stages we go through as we learn to live with lipedema.  I recall reading Elizabeth Kubler Ross’s beloved book, On Death and Dying, about the 5 stages of grief. Our journey is a lot like that.  Relief. Information Overload. Exhaustion. Act. Repeat.

Relief.  Learning for the first time that there is a name for what you have known or wondered about for many years is a welcoming feeling initially.  I don’t know about you, but for me, I had explained my legs to many different physicians through the years leading up to my diagnosis.  Most didn’t listen. When my questions and explanation of my real experience was generally met with another diet or exercise plan.

I lost weight many times over and my legs didn’t change, and they still bruised and ached without explanation.  I had given up.  So, hearing the word lipedema for the first time, and googling for more information and seeing pictures for the first time… it was life-changing stuff.

But that led to information overload.  You know what I am talking about.  This is the point in your journey where you are neck-deep in gathering information, doctor’s names, possible treatments, recommended dietary supplement, compression garments, surgical outcomes, cost comparisons, recovery plans, etc. etc. etc. Your mind is full of details and possibilities, and yet you feel overwhelmed with the immensity of it all. You probably wish it could all go away, and yet you are excited that at least you have a name for “it” and friends from around the world who are on the same bumpy road.

Which leads to exhaustion.  Your brain has overloaded due to the constant volley of questions you have fielded. “Do I need to lose some weight before I have surgery?”  Don’t lose any weight before surgery so that you can tolerate the anesthesia better.”  “But, wait, maybe the best results will come if I lose 10 more pounds, or eat less dairy, or eat more red meat, or reduce my carbohydrate intake, or increase the amount of fat that I eat, or walk 5 miles a day, or stay off of my feet, or wear compression or make sure my compression isn’t interfering with my lymphatic system.”  Whew.

Finally, you act.  Whether your action is changing your diet, increasing physical activity, wearing compression, swallowing supplements, and eating Brazil nuts, or planning your surgical intervention, you are all about getting it done.  Make a plan.  Work the plan.  I know that at this stage in my winding road, I had no idea what was around the next corner.  I was focused on my personal solution for conquering lipedema.  And I am thankful for that.  I’m glad that for a few peaceful months, I was focused on surgeries and recoveries, because…

Repeat happens.   Little did I know then, that even years later, I still worry about lipedema.  I still check my legs each morning in the shower to see if they grew overnight.  I still worry about maintaining my diet, getting enough exercise, marveling that my boots fit, struggling to pull up a brand-new pair of compression leggings, and all those other lipedema things. There’s relief and yet the journey is for a lifetime.  Be well.  Live well.  Take deep breaths. Stop being so hard on yourself.  Enjoy YOUR journey.