Life with chronic illness (or several) is not what most would describe as a perfectly pleasant cup of tea.
In fact, most would consider one more than enough.
But we do not dictate the dishes life serves off its menu.
Instead, we are force fed situation and circumstance. So, you either make do, add a bit of “this,” perhaps a bit of “that,” and eat it up, or you can move it all around the plate. Never consuming a morsel.
But you cannot send it back to the kitchen.
My appearance has never been something I am comfortable with, and the battles within are many.
I was always the heaviest, biggest kid in the group. Regardless of my constant physical activity and mindful eating. My brothers were/are pictures of athletic perfection, who could devour everything in sight and physically never change.
Everyone from friends to family made sure to let me know there was something wrong with my appearance. Whether it was my weight, my teeth, or the sudden appearance of Vitiligo under my eyes, in my early teens.
Sometimes people have been (are) outwardly cruel with their critiques. Others were subtly suggestive in their commentary.
I have been ushered to doctors of all sorts my entire life.
Dietitians and food consultants for the purpose of losing weight. Dentists and orthodontists to improve my smile. Dermatologists for creams and skin grafts to rid my face of the unsightly white spots.
Eventually some of the weight was lost. Whether due to puberty or then undiagnosed Type 1 Diabetes or me starving myself. I eventually became what society perceives as “normal” in size (although I have recently inexplicably – likely (peri)menopause – gained anything and everything I ever lost). My teeth were straightened, fixed up. But the Vitiligo just kept (keeps) spreading. And spreading.
In fact, I noticed two new spots emerging on my right hip this morning.
None of the creams worked. None of the grafts took. I just kept getting blotchier and blotchier. First it was a small spot under my one eye, then a spot on my left hip. Another under my armpit.
Being uncomfortable in one’s skin is a massive hurdle to jump. And as a teenager I truly struggled with my appearance.
Sadly, sticking to the business of honesty, in my 40th year, not much has changed.
I have always been told I have personality. Loads of it. I have been told I am funny, a bit of a ham even (ironic given my often-crippling social anxiety). And perhaps I have used that as my cover. A ruse. A distraction.
Keep ’em laughing, and they won’t be able to LOOK at you.
I used to be able to stand in front of crowds of hundreds, thousands, and feel no way about it. Even though I devotedly disliked my appearance. But something shifted. And, while I can still do it, my anxiety blankets me in a serious want to not.
So, when I do speak at events or in meetings, it is a building of nervousness pre-event and then days of recovery post.
Regret on the Regular
Little did I know that my Vitiligo would be the least of my worries.
Following that came Persistent Depressive Disorder – though when I was originally diagnosed, it was referred to as Dysthymia – and then Type 1 Diabetes. I was able to ride those out for some time until I had a complete breakdown in my early-mid twenties. My plate was then loaded up with Body Dysmorphia, Social Anxiety Disorder and General Anxiety Disorder. It was also suggested that I likely have OCD…
Then I was loaded up with a lot of fucking drugs.
Having become a master at hiding all my other ailments/illnesses, these new ones made things more complicated. My plate was suddenly weighty, and bulky for my two small hands.
It was then that I started guilt consumption.
Suddenly, I could not get enough of the stuff. Hmmmm, delicious guilt. I wanted to eat up all the guilt. And when it was gone, I wanted more. It was an insatiable yearning that morphed into a curious feeling of comfort and desirable dissatisfaction.
Somehow it was okay for me to feel bad.
Like the worse I felt the slimmer the chances those around me would be impacted in any way.
There is a special section in my person reserved for the guilt that comes from all the times I have disappointed my family.
At least it is my perception that I have been a source of disappointment.
I know that if you were to ask my husband and son if my diabetes and/or mental illness struggles have ever been an inconvenience or disappointment they would reply with a resounding NO.
I know this because when those pinches happen, I am generous with apologies and self-deprecation, and they are equally so with their love and understanding. But their care, fairness, and concern are no match for my keen ability to slather myself with shame.
Bathing in all those bad feelings is an art-form and I am what some might call, a master.
There have been countless times in my life where my T1D has interrupted, delayed, or forced the cancelling of plans. And if you are a fellow T1D then you will know that those moments are often without fault.
There have been more times where my anxiety is the culprit. Whether it is a full-blown anxiety attack – which can sometimes resemble a toddler’s temper tantrum but with less yelling and foot stomping (though sometimes there is yelling and foot stomping!) – or something milder.
It has, without a shadow of a doubt, interfered with the best laid plans.
And I have lied about it.
Straight up. I have many times blamed diabetes when mental illness was at fault. Because I have been ashamed. Ashamed of myself. And embarrassed, that I could not quite get it together. Because sometimes I just can’t…
And the weight of that is crushing. Crippling. Maddening.
I would be the first person to tell someone else, it is valid to have those feelings. It is acceptable to feel that way. It is okay to not be okay.
But somehow that does not always translate for me. I absorb and internalize culpability. And it may quite literally be the death of me one day.
I always feel guilty when plans need modifying because of me.
A lot of people with chronic illness also suffer from incurable remorse. A feeling that I believe is totally understandable.
We are charged with these mental and physical faults beyond our control, and even beyond our comprehension, and expected to just carry on completely composed. The forecast laid before us is one we are expected to get through without so much as a murmur.
Roughing the waters means too much trouble. So many of us keep quiet, silent even, with the hope that this too shall pass. Because the alternative is often a domino effect that can result in catastrophe.
And, quite possibly, our own undoing.
If not the unraveling of the entire sweater.
How this translates for me daily is as follows:
* wake up, if I’ve even slept, and feel like crap, if I’m lucky;
* if my blood sugars have been wonky overnight, wake up and feel like shit;
* look at myself in the mirror, see all the flaws, and embrace the heartbreak;
* a quick mental check hopefully finds me in my treasured grey zone;
* look at myself again, look closely at my face, and the heartbreak deepens;
* try to push the sick-to-my-stomach feeling down to my soles;
* abandon all my other feelings, for now.
Most days I do not have time to address how I am feeling or why I am feeling that way. Regardless of whether those feelings reflect how I am physically or mentally feeling.
Though sometimes physicality decrees that I lay on the couch. To avoid further physical destruction. Because my combustion will quite literally mean the end of all things. I know I am not alone in that. And it does not even matter if that is factually true or not, it is the feeling that I (we) carry.
And that makes it valid.
But it also makes for a burdensome load.
On the bad days, we go back for more. As if the fact that we are feeling poorly means we ought to feel worse. So, we heap on the guilt until the plate is so wrought with harsh deprecation that it feels as though it will topple.
But it does not.
Because we are so skilled at carrying that load, we make it look easy. In fact, one could argue, we make it look as though it isn’t even there…
And that is wrong.
Because we should not be taking those seconds only for ourselves. If we are to indulge, those indulgences are something we should share, because there are people willing to help clear that load.
A shared plate is more likely to be finished one.
Because you cannot send it back to the kitchen.
And you know what else?
If you share the plate, the table is more likely to come alive with conversation and even laughter.
** It should be noted that a version of this post was previously posted on
Dead Pancreas Anxiety under the title Guilty Pressures, back in July of 2019. **