What’s Wrong?
Here is the answer to the question I get most often, "What's wrong?"
Maybe fasten your helmet.
My experience is that it’s significantly worse than people are imagining.
*
A long time ago I was injured badly and sustained severe damage to my pelvic nerves - and that incident precipitated three major problems:
One: CRPS, or complex regional pain syndrome, also known as The Suicide Disease. It's the most painful pain syndrome that exists. Mine is in my pelvis, abdomen, bladder, spine, butt, and upper left leg. I can't wear pants, I can't have sex, can't ride a bike, and I can't sit in most chairs without extreme burning pain and swelling.
It's very, very bad.
Two: the damage to my nerves also caused my colon to stop functioning completely, and it was ultimately removed. I now have an ileostomy bag, which is similar to a colostomy bag.
Also bad.
Three: ME/CFS, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. How did an injury precipitate ME/CFS? When I was injured I also became septic, a major infection of the bloodstream - and the most common trigger of the neuroinflammation that is ME/CFS is a serious infection.
ME/CFS, if you're not familiar, can be extremely disabling.
There are degrees of severity in ME/CFS.
Mild, you feel vaguely terrible all the time, but you can still participate in most of your life.
Moderate, you feel like you have the flu all the time - you're extremely exhausted, with aching muscles and joints, severe digestive problems, severe brain fog - you actually can't participate in much of your life. You miss weddings, funerals, concerts, holidays; you can't work except from home; you mostly can't do very much with your friends and family at all. You do what you can, but life is pretty small and pretty miserable.
Severe, at its worst, is also called a Living Death. Much of the time you feel sicker than you have ever felt in your life, you feel like you are dying, you are bedridden or at best housebound, you need a caretaker, and you can barely tolerate even a conversation - it is a nightmare.
ME/CFS is **lot** worse than people think it is.
I have experienced all of these stages at different times.
From 2003-2013, my ME/CFS was mild, trending down over time to moderate. I didn't feel good, but I was able to be in a band, I worked for Obama, I did things.
From 2013-2016 I had a major health collapse and became severe - I needed a wheelchair and full time caretaker and didn't see a single friend for almost three years.
From 2016-2020 I clawed my way back out to moderate - I was still very sick, but I was able to do a little - I dated someone, and even played four or five shows.
From 2020-present I have been on the cusp of moderate and severe. I can live independently, I can take a short walk most days, I can feed and clothe myself - but that's about all I can do. I can only see a friend or even just another human being on average once every one to two weeks.
Let me underscore this: one substantive human interaction every one to two weeks. And when I do see these friends, or do anything social that lasts longer than two hours, I tip back into Severe for days or a week (this is called a "crash"), unable to barely move, shower, eat.
It is incredibly glamorous and looks like this:
This is profoundly isolating, limiting, and disabling.
And of course, it's in addition to the external poo bag and the severe pain.
Finally, I also have several lesser, co-morbidities that are common to ME/CFS: MCAS/Mast Cell Activation Syndrome (this makes you allergic to what feels like everything), POTS/Postural Orthostatic Tachycardia Syndrome (this makes you dizzy if you stand in one place too long), severe gastritis (mainly just a lot of stabby pain when eating all kinds of different foods - I'm limited to about 12 foods total) and EDS/Ehlers Danlos Syndrome (a connective tissue disorder, which in my case mostly manifests as troublesome for my ileostomy and I've had to have 4 re-operative surgeries to stabilize my poor lil stoma). This pileup of syndromes is extremely common with ME/CFS.
When you put it all together, it is really, really bad.
I wrote a book about illnesses like mine, which can range from bothersome to severely disabling, and in most ways, I am on the more extreme side of that ledger.
But here is a question, and I want you to answer honestly:
Is any of that nightmare-soup what you are possibly imagining when you see this person?
I’ll answer for you:
No, it is not.
This is probably the hardest part. This illness is mostly invisible.
Above is a picture of me on one of my rare jailbreaks, white-knuckling it as I am able to do for very short and infrequent periods of time.
And I get it. That person does not look sick.
You see, I’ve made the grievous error of not tattooing the McGill University pain scale to my face.
Or getting my ostomy bag attached to my neck instead.
And for some reason I don’t carry around a bunch of these guys to hand out like playing cards:
These photos depict MOST of my life, but it is all happening behind closed doors.
And so when I finally poke my head above ground to try and get some much-needed human connection, the whole world seems to bellow:
“GUESS YOU’RE NOT SICK ANYMORE!!”
or
“If that’s what chronic illness looks like, then sign me up! Har har!”
or
“I’m in the exact same boat as you - I have a little IBS.”
or
“In a sense, we’re all kind of housebound since the pandemic, you know? I never even go to the movies anymore!”
These are not the things you say to someone with an extremely serious, life-altering illness - but it’s definitely what a lot of people say to me, and to other people with severe but invisible illnesses. One gets the distinct sense they are trying to help you see that you have perhaps made a mountain out of a molehill.
Ah, but that’s actually why I am making this little What’s Wrong primer.
My friend called it The Lady’s Zine for her Mysterious Illness.
I have received the feedback that people need visuals in order to truly take things seriously, and so visuals ye shall have.
Because I feel confident we can all agree:
Being housebound and/or bedridden 95% of the time, not being able to eat almost anything, having an ileostomy bag, pelvic nerves damaged so badly you develop a pain syndrome called the suicide disease, never having sex again, or wearing pants, or sitting in most chairs, or traveling, or having children, having to mostly give up two dream careers, losing almost your entire social network because it is so hard to leave the house, seeing a single person once every two weeks, having twelve major surgeries/procedures in ten years….
Is not a molehill.
Or if it is:
That’s really some mole.
I’ve made The Lady’s Zine for her Mysterious Illness because I need the people around me - be it new friends, people I have to work with professionally, strangers on the internet, old friends wondering how I am - to reflect back with at least ballpark accuracy what is happening to me.
Everyone needs this.
If you got in a car accident and ended up with my exact same symptom set - crippling pain, a poop bag, 15% of your previous energy level, a permanent flu, and being mostly confined to your home or bed - and people said to you:
“Ugh SAME.”
Because they were dealing with a little bit of heartburn…
Well, I think you, too, might end up making a little zine for yourself.
So that’s basically it, folks.
Thank you for reading.
And if you ARE a new friend and are wondering how to make that work despite :::waves arms around at copious bowls of nightmare-soup::: let’s chat offline.
Because I know this is all a bit of a bummer to take in, but the reality of being friends with me is that it looks a lot more like this:
I love to laugh. I love people. I love to tell stories. I love to hear your stories. I love to make art.
Sure I can only “see humans” a couple hours a week - but that means I want to make the most of it.
I am almost pathologically optimistic - the Winnie the Pooh of chronic illness, the Mary Poppins of incels - and I will dig down to the molten core of the earth to try and find something to laugh about, something to enjoy, something to appreciate.
All I need is all anyone needs:
A little help from my friends.
Which in my case mostly just amounts to saying: “Girl, WHAT? Damn, that really sucks.”
And offering to meet up at my house instead of in those torture devices (i.e. “chairs”) at the coffee shop.
xo
Sarah