It's been an especially rough week.

This past year has been very difficult, but the past few months have been hard in hyperdrive. Summer has felt like a black hole.

My lipedema got to the point where I couldn’t keep ignoring it or pretending that I was to blame. I had a skin cancer scare. Sophie had what turned out to be a benign tumor removed from her arm. My mother died. I developed new aches and pains in my back and right shoulder. Yesterday, I finally scheduled Sophie’s tonsillectomy for December, but I also found myself feeling spectacularly low and grumpy.

Just so… ragged.



The summer before 8th grade, I wrote a letter to my band teacher, asking if he would mentor me. I was scared and lonely because my mom had recently told me and my older sister that she was dying and had bone cancer.

I wasn’t quite 13 and my sister had just turned 18. To this day, I viscerally remember feeling terrible because I was so conflicted about everything. There was this part of me that feared my mother’s illness was my fault. Did I… want my mom to die? I was afraid that maybe I was some sort of…

Yes, I was wrong.

Hey folks, this is just a quick message to let you know that Medium reached out to me and requested that I edit two recent stories that named certain male writers. They were quite kind about it and explained they weren’t asking me to take down the stories or to not tell them. They were clear that they also didn’t wish to minimize or discredit my experience. And I appreciated that.

However, they brought up a good point — that others might respond with “vigilante justice” which can harm everyone and anyone. …

Thank you for the messages and condolences about my mother’s death. I’m not great but I’m chugging along. Kinda.

Friday night or Saturday morning (don’t remember which because the days are all blurry), I developed significant pain in my right elbow/arm/shoulder and the back of my left knee became really weak. So weak that I realized I might not be able to get down the stairs. These are pains I’ve never had before that have even further impacted my mobility, but I honestly have attributed them to stress or grief. That’s all that really makes sense to me.

I’m not…

My mother died last night.

I… guess?

My sister and I weren’t sure if she was playing a trick on us since she did things like that in the past. Some of you might recall how she had factitious disorder aka Munchausen’s syndrome.

I did not believe it at all at first, honestly. That she had passed.

It’s a very difficult loss for many reasons but most of all, neither she nor her nurse/hospice people contacted me about beginning her end of life procedures.

I only knew something was “off” because for the past few months, she rarely contacted me and only through text messages…


Ever since I was a child I’ve had a beast complex. Precocious puberty and lipedema deeply impacted me and led me to feel as if I don't even belong with humans. Facing fat stigma from medical professionals, family, friends, and strangers made it even worse.

Recently, I’ve been unpacking an awful lot of baggage surrounding these experiences, the past 30 years, and how much life I’ve lost to my disease.

There are many layers or degrees of pain, but the big overriding trigger is the way I see that other folks tend to either see right through fat bodies or…

They pretty much made my point.

Photo by Icons8 Team on Unsplash

When I recently wrote the story about how hurt I was that popular men in a certain Slack group were unwilling to share my story to help me fight for lipedema treatment, I expected to get raked across the coals. Seriously. I know how much many people on Medium love themselves some self-help writing, so I expected to have folks criticize me in response.

However, the reception and comments to that story were pretty much the opposite of anything I expected. People were highlighting, nodding, and agreeing with me. …

I’m guessing a lot of the battle is worldwide fatphobia.

My sister Bethany (left) and I (right), circa 1986. My body before lipedema.

It might surprise many readers, but America isn’t the only country where it’s so hard to get treatment for lipedema.

Just yesterday, Dr. Amron, the lipedema surgeon I plan to see as soon as possible, posted about the fight for coverage in the UK on his social media channels.

Here for yet another awkward selfie. Hi.

Over the past few weeks, I’ve been getting an awful lot of questions about why I’m crowdfunding for lipedema surgery and why I don’t do (fill in the blank) instead. Naturally, I’m pretty exhausted from answering the same questions over and over again, so I finally have put together a piece that will hopefully fill in the blanks to some of those frequently asked questions.

To be clear, I’m happy to answer questions. I simply lack the energy to keep writing out individual responses.

Without further ado, why haven’t I…

Tried Obamacare?/Gotten Medicaid or Medicare?/Applied for disability?

Phew… so, I’m lumping all of these questions together, because…

With… some valid points too.


If I may make one request before getting into this piece, it’s that you don’t read it with pity and you don’t respond with pity, either. PLEASE. You see, I’m not writing this story in a fit of self-pity at all. I’m writing it in frustration with myself and plenty of overwhelm, but I still have plenty of self-awareness too.

Meaning, I grasp how I’m shooting myself in the foot lately. Even so, it’s like I just can’t stop.

Deep breath…

So, I’ve been averaging 4 hours of sleep a night and my body is telling me, “You dummy! …

Shannon Ashley

It's not about being flawless, it's about being honest. 🍵 📧

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