Episode Sixteen - Chronically Ill; chronically waiting.

chronic illness, healthcare, diagnosis, mental health, patient experience, waiting, illness, support, resilience, advocacy

summary

In this episode, Dear Psychopomp shares a deeply personal narrative about living with chronic illness, exploring the emotional and psychological toll of waiting for diagnoses, the impact on relationships, and the challenges faced within the healthcare system. The conversation emphasizes the importance of empathy, understanding, and advocacy for oneself and others in similar situations.

takeaways

• Chronic illness affects millions, yet often goes unseen.
• The waiting period for diagnoses can be torturous.
• Patients often feel dismissed due to their age or appearance.
• Living with uncertainty is a common experience for many.
• Support from loved ones is crucial during difficult times.
• Advocacy for oneself in healthcare is essential.
• The psychological weight of illness can be as heavy as the physical.
• Time in hospitals can feel distorted and isolating.
• Empathy and understanding are vital in supporting those with illness.
• Sharing experiences can foster connection and resilience.

Check out the Grief Talk Magazine June edition at: https://online.fliphtml5.com/ucekv/ofoc/

Check out Tony Lynch's podcast, https://www.youtube.com/@griefletstalkaboutit

You can find me online at www.dearpsychopomp.com

or contact@dearpsychopomp.com

I hope your weekend is gentle and full of opportunities ♡

Transcript

Dear Psychopomp (00:01.858)
Hello, hello. Before I get going, I just wanted to say a huge congratulations to my adoptive brother, Tony Lynch, for hitting 80,000 downloads on his podcast and for releasing his magazine, which will feature articles by yours truly. I'm so very excited to be a part of what he's doing and you can find the links for the podcast and the magazine in the description of this episode.

And I want to say that I really appreciate you for sticking around. I've been pretty sick lately. Not a cold or a bug or anything like that. It's the big stuff that makes you worry. The kind of thing that makes your world come to a screeching halt and nothing makes sense anymore. One of those pivotal moments.

again, one of those things that ages you a little more and makes you little more mature, if you will. And it got me thinking and it got me researching. And in North America, the land of abundance and algorithms, we like to believe that we are healthy and invincible until of course you're not.

not a polite cold or a tidy sprain, but truly unsettlingly sick. Sick in a way that doesn't resolve with rest or time.

and then you learn one of the cruelest parts of illness is not the pain, but the waiting.

Dear Psychopomp (01:57.998)
Each year, roughly 133 million Americans, which is more than 40 % of the population, live with at least one chronic illness. And in Canada, it's over 44 % of adults and rising. And those aren't just abstract numbers. These are people, mothers and sons and neighbors and the woman next to you in line at the pharmacy, all

learning to live while slowly falling apart.

Diagnosis you might think would be swift. It's 2025, but it's not. There was a study published in the Journal of the American Medical Association that found that delayed diagnosis is a leading contributor to preventable harm in healthcare. For conditions like lupus, endometriosis, multiple sclerosis, and even cancer.

Patients are often waiting months or even years before receiving a name for their suffering. And in that cavernous waiting,

The mind becomes a theater of dread. And it is Shakespearean. You lie in bed rehearsing the phone call that you haven't yet received. You think about cancer. You think about dying. You look at your partner or your pet or your favorite coffee mug and imagine a world where you are a memory.

Dear Psychopomp (03:45.646)
And you don't tell most people this when you're contemplating your mortality. And there's no map for what happens when time stops meaning anything but intervals between lab results.

In the United States, the average wait time to see a specialist is 26 days, though in many areas it's double that. In Canada, despite our universal healthcare system, specialist wait times can stretch past five months with important imaging tests like MRIs averaging a 10 plus week wait.

Time doesn't heal all wounds, it just allows them to fester unseen.

Dear Psychopomp (04:37.023)
And while the system grinds impassively, your life becomes a strange performance of normalcy. Smiling through the unknowns, working through exhaustion, whispering your fears to Google in the dark hours of the morning.

But this is not just an elegy. It's also a plea.

to policymakers, to healthcare systems, to anyone listening, we need more mental health resources. We need to recognize that time is not a neutral quantity when you are waiting to know if your body is betraying you.

And to the lucky, those who are still whole and still well, I offer this.

Next time someone you love is waiting on results, know that they are living inside a slow motion terror that you cannot see. Don't rush them to be optimistic. Don't tell them it's probably nothing. Instead, sit beside them in that coffin-shaped waiting room.

Dear Psychopomp (05:56.48)
Offer silence, offer soup, offer the deep, holy acknowledgement that not knowing is its very own kind of suffering.

Because once you've looked death in the eye, even just the idea of it,

You never walk quite the same way again. And in a country where millions are made to wait for answers, the least we can do is stand together and help each other out. Look for the helpers.

Dear Psychopomp (06:37.581)
I understand chronic illness very well. I was 21 when my body started breaking down in ways that I couldn't explain. At first it was small things like stomach aches, strange fatigue, random fevers. I brushed it off. I was young. Everyone said so. I had went like three jobs at the time. I was

busy. I told myself it was probably stress or something I ate.

And I was so terrified that I waited six months to say anything to a doctor. And that's the first thing that chronic illness teaches you. How to wait. How to second guess your own pain. How to wonder if maybe this is just what being in your 20s feels like.

So when I finally made the appointment, I was hoping for reassurance. What I got was something.

Much worse. More questions. More confusion. More waiting. And the tests. All of the tests. Now I may be covered in tattoos and various piercings, but I still hate needles. And I have these weird veins that are like ninjas. They like to just disappear on people, so even just going to get blood work done.

Dear Psychopomp (08:20.01)
is an event.

And that's when the real illness is, or sorry, real illness began.

not the physical part, but the psychological weight of living in medical limbo.

The tests started with blood work and scopes and scans. Everything took weeks, months, entire seasons passed. And during that time, I don't know why I was told more than once that it's probably cancer. And then nothing. Just we'll call you when we know more. And...

No one ever tells you how loud silence can be.

Dear Psychopomp (09:19.691)
And I lived in that silence for two years.

With all the tests and everything, was inconclusive and we had to do it again or they needed more blood or they had to check this, that and the other thing. every call that I missed felt like it might contain a death sentence. Every symptom became something I mentally autopsied. I learned how to live without breathing fully, without...

planning for anything beyond the next appointment.

I learned how to lie to my friends and family and say I'm fine. Because I might be dying doesn't land well over drinks.

I even had people, multiple people, who I thought were my friends. My ride or die.

Dear Psychopomp (10:23.511)
They told me, and I quote, your illness is becoming really inconvenient for us. What if we were having a barbecue and you were supposed to bring the hot dogs, but then you ended up getting hospitalized again?

Dear Psychopomp (10:41.782)
My

brand new incurable disease had become an inconvenience?

Dear Psychopomp (10:56.717)
for them?

Dear Psychopomp (11:02.081)
and I learned what it's like not to be believed. I was dismissed constantly because I was young. Young and tattooed and pierced and angry and scared. Too young for something serious. Too young to be a priority. Too young to be in the waiting room full of older, visibly sick people.

Dear Psychopomp (11:32.551)
It's... I don't know if I can find the words.

being 21 years old in a gastroenterologist's office and nobody else in there is south of 65.

The first day I walked in for my appointment, I was so nervous. And I walked up to the receptionist. She said, are you here to pick up a grandparent?

That was the first of many.

I remember one moment in particular. I was sitting there just...

Dear Psychopomp (12:26.093)
trying to focus on something. The wait was long and the magazines were old and...

You know, that was long before cell phones were our constant companion. And I would read or just people watch.

And whenever...

my gaze connected with another patient's.

I saw a pity in their eyes and sadness.

Dear Psychopomp (13:06.357)
I remember sitting there fidgeting in one of those gross beige plastic chairs, the youngest person in the room by at least two decades. And then I heard someone call my name. Anne-Marie?

It was my good friend's mom. She was there for her own appointment. But when she saw me, she started crying.

She walked over and wrapped me in a hug right there in the waiting room.

Dear Psychopomp (13:43.757)
She said, you're too young to be here. And I wanted to say, I know.

But I didn't. I couldn't. I just cried too.

And eventually after two years of the slow motion dread, I was diagnosed with Crohn's disease, a chronic inflammatory bowel disease.

Not IBS or IBD or colitis. Not cancer. Not death. But also no cure.

just an entirely new reality.

Dear Psychopomp (14:27.243)
my my world ahead.

on ass over tea kettle and...

Dear Psychopomp (14:39.019)
a new reality that would follow me for the rest of my life and interrupt my dreams and rearrange my entire trajectory and my contact list.

There was a strange relief in finally having a name for what was happening inside my body, but the diagnosis didn't undo the damage from years of waiting and the weeks spent convincing myself I was overreacting. The subtle and not so subtle dismissals from professionals who looked at my age and didn't take me seriously.

The shame I felt for taking my health and my body for granted and knowing that I wouldn't be able to do many things.

Dear Psychopomp (15:38.359)
With Crohn's often comes arthritis, osteoporosis, psoriasis, and I already have arthritis in my knees and my hips. I'm not even 40 yet. And I can tell you within about 20 to 30 minutes if it's gonna rain or snow.

Dear Psychopomp (16:01.377)
In the beginning, I was started at 44 pills per day. My entire life rotated around the medication schedule. This in the morning, this after food, this on an empty stomach. I wasn't living. I was surviving. I was counting. Now I'm down to a paltry nine pills per day, not including the gummy vitamins.

If I can avoid taking pills, I will. So gummies for the win. And I do an infusion every eight weeks to stave off the next surgery for as long as possible, which also leaves me immunocompromised and I can't go out in direct sunlight and all that fun stuff.

Dear Psychopomp (16:53.917)
I have had 21 endoscopies, countless MRIs and CT scans and x-rays. I don't even know how many times I've been in the emergency room for a flare. The pain...

is unbearable and I have daily nerve pain, most likely from the two major abdominal surgeries that I've had, down about, I think, 30 centimetres.

Dear Psychopomp (17:29.241)
and 30 centimeters taken out. And when you're in pain, no matter how much pain you feel, it's all you can think about. Even a paper cut, especially a paper cut or a sliver. And when you are doubled over in pain and unable to walk,

You panic.

Dear Psychopomp (18:01.645)
It is literally all you can think about. You ache from the fear in your chest that hits you like a semi.

wondering if I have to go to the ER.

If something else is wrong, do I have another ulcer?

Dear Psychopomp (18:23.519)
and it just quietly reminds you, well, not so quietly. Every now and then I'll have really good days where I honestly truly forget that I have Crohn's.

and then other days.

Dear Psychopomp (18:41.837)
It reminds me, rudely.

And I resented the healthcare professionals at first. Not all of them, but enough to leave a mark. The ones who told me what to do without really listening. The ones who looked at me like a checklist, not a person. To them, I was another patient, another file, another young woman with...

lower abdominal pain, but to me this was my entire life. And I've been to the ER so many times that I will tell them my allergies, I'll tell them my intolerances, I'll tell them which vein is the good one, and as good intentioned as that is, apparently that makes you look like you're seeking drugs.

So I usually get a talk screen and whatever done to you, which is just insulting, by the way.

Dear Psychopomp (20:00.162)
They didn't see the fear.

that came before the appointment.

Dear Psychopomp (20:08.043)
the way I'd sit in the car white-knuckling the steering wheel, praying that the pain wouldn't explode on the way there.

or that I wouldn't need a bathroom between point A and point B. They didn't know what it took to get dressed when every joint in your body is aching. To show up, to speak up.

trying not to cry when I said it still hurts.

and they respond with a shrug or a suggestion to monitor it for now or to take time at all.

Dear Psychopomp (20:57.269)
I wasn't being dramatic. I wasn't exaggerating. I was drowning. And it felt like they were standing on the shore holding a clipboard.

Now that I'm older, I understand its truth. Its disconnected system that is understaffed and overwhelmed and burned out.

Dear Psychopomp (21:29.003)
More often than not, they're doing the best that they can as well.

Dear Psychopomp (21:37.293)
I still live in a constant state of waiting.

crones does not go away. They still don't know what causes it, so they don't know how or if they can even cure it.

If I had been born 20 years earlier, the medicine available at the time wouldn't have been advanced enough. And with how severe it was after those two years, I wouldn't be here today. And that is a very sobering, humbling thought.

Dear Psychopomp (22:22.133)
Nearly every medication I tried either failed me, it had too many side effects, I became allergic to them, or they gave me anaphylaxis, which is something I wish to never experience again.

Dear Psychopomp (22:40.205)
Fun fact, the scene in Alien when the chestburster bursts the chest, it was written and described by Dan O'Bannon based on his personal experience with Krone's and I can testify that it's pretty dang accurate.

And I still have the appointments and the tests and the flares and the uncertainties. I never know if I'll have a good day or a bad day.

My baseline is intermittent stabbing pain and nausea. I'm still navigating an imperfect system that holds my life in its shaky hands.

Dear Psychopomp (23:26.743)
But after nearly 20 years, I've learned something close to patience. Not the passive kind, but the gritty practice endurance of someone who has sat in too many sterile chairs and knows how to breathe through the unknown.

Well, mostly. It's still a practice.

So to anyone else in the waiting room, I see you. You are not alone.

You are important and you are absolutely encouraged to advocate for yourself. Ask all the questions, write them down, keep a journal with symptoms and times and dates and tests and questions for all your healthcare professionals. There are no silly questions when it comes to your health, physical and mental.

And to those of you who know exactly how many holes are in those ceiling tiles at the hospitals, personally, I have made it to the 40 some odd thousands before.

Dear Psychopomp (24:47.873)
I see you.

Dear Psychopomp (24:51.575)
Time goes by differently in hospitals. Minutes drag, hours moan on, weeks pass. And while visitors and medical staff are great, there is a lot of time spent alone with yourself and your thoughts.

morning the good day that you had the day before.

rudely interrupted by the bad day you're having today. I hate the uncertainty of...

Dear Psychopomp (25:27.495)
not knowing if I should go to the hospital or not.

because it's been minimized so many times. It's like, okay, know, am I gonna be taken seriously? Are they gonna listen?

And while I appreciate the efforts.

with, you know, being cautious about giving people painkillers.

I'm not lying about my pain.

Dear Psychopomp (26:03.341)
I know some people do and I don't know why, but that doesn't mean everyone does. Anyways.

Dear Psychopomp (26:11.309)
It said that time heals and it does. It softens those sharper edges. It lets us breathe again. It helps us forget the worst of certain days.

But time can also wound.

quietly, relentlessly, especially in the moments when we're trapped in that uncertainty or grief, waiting for answers that we can't control.

And when life holds its breath.

and nothing moves forward.

Dear Psychopomp (27:01.005)
Time becomes a weight instead of a bomb. It's not just the hours that we lose to fear. It's how those hours change us.

Time can stretch into something cruel when you're waiting for a phone call or a test result or a name for your pain. And there are some kinds of waiting that leave bruises and scars that no one else can see.

Dear Psychopomp (27:37.463)
Thank you for listening to this week's episode. Stay tuned for information on a live death cafe that I'm working on. Date to be determined. I'm open to suggestions. If this episode resonated with you, please hit the like button, share, subscribe, follow. And if your platform allows, leave a comment and kindly let me know what you think. Your support keeps this podcast going.

You can find me online at deersycopomp.com or by email at contact at deersycopomp.com. Death isn't a secret. Let's talk about it.