TW: Suicidal Ideation
Realism. It’s who I am. I’ve never minced words. I don’t sugarcoat. I lay it on the line exactly as it is. Turns out, I’m not the only one. A brave, caring, and wonderfully snarky woman I met on Instagram wrote a post about living with chronic illness that’s so boldly unapologetic that I asked her if I could turn it into an article for this site.
She graciously said yes.
So, here’s the thing. Will these statements seem negative? Of course! Are they a reality for many people living with chronic illness. Yes.
Will some of these statements piss you off? Probably. But wait for a moment. Put your anger and skepticism aside for the length of time it takes you to read this article. You may think there’s nothing worse than cancer because you hear so much about it, you’ve had family members go through it, or maybe you’ve dealt with it yourself.
I can tell you from personal experience that cancer is horrible, frightening, and painful. My aunt, father, and cousin have all battled it (practically at once), and I had melanoma in 2007.
Still, what this person wrote doesn’t offend me because I took the time to try to step into her shoes and see where she was coming from. And, truthfully, I’m humbled and amazed by her strength and proud to share her insights with you.
Also, if you’re a spoonie, and you’ve had these thoughts, you’re not alone, you’re not a bad person, and it’s OK to feel this way.
“I wish it was a visible illness.”
Then, maybe people would take me seriously and have compassion.
“What Cracker Jack box did this MD get his degree from?”
Did they forge it? Is it hard to forge?
“I can’t wait until this appointment is over, so I can Google some factual information.”
There’s nothing quite so disheartening as sitting through a doctor’s lecture about your condition and realizing mid-way through that he actually has no idea what he’s talking about! It’s scary and off-putting to be more of an expert on your chronic conditions than a person who is supposed to be trained to help you get better.
“I wish I had cancer.”
If I had cancer, friends and family would want to know what they could do to help. They’d ask how I was feeling instead of demanding to know why I wasn’t better yet.
Instead of endless days spent in agony, being treated like a drug seeker when I FINALLY give in and go to the doctor to help find relief from the pain, I’d already be given pain relief options, without having to beg.
I’d be getting treatment that would either work to put my cancer in remission (for most cancers, though there are some chronic cancers), or it wouldn’t work and I would die.
One way or another, there would be an end to the suffering.
“I wish I hadn’t had children.”
What if I pass this on to my child? I can’t be the mom she deserves. I feel so guilty because my child just wants to spend time with me, she misses me, but I’m in so much pain, all I want to do is be left alone.
“I want to die.”
I don’t want to be here. This pain is too much, this life is too much, this burden is too great. What am I supposed to do when I am in so much pain that I’m literally crying out yet the doctors won’t help? There is nowhere to go.
“No, you don’t understand.”
Unless you have a chronic illness, you don’t understand what it is to have a chronic illness. Comparing it to your worst flu or the time you broke your leg skiing at a mountain resort does not count. If you want to have a better idea, imagine having the flu, breaking your entire body, and having to live like that 24 hours a day, 7 days a week with no rest. That’s much more accurate.
“No, I will not look on the bright side.”
There’s no law written that I have to look on the bright side or be grateful it’s not worse, so back off if you’re going to continue to make statements like this.
Also, there is always going to be someone somewhere who has it worse, but their reality does not make mine easier. Just like if I have a broken back and you have a crippling migraine, my broken back is obviously far more serious, but is it helping to alleviate your migraine? Of course not! This is why pain comparisons like this make no sense.
“I wish I was an amputee or a paraplegic.”
I would still have better quality of life than living with severe POTS. I’m part of the 5 percent that is bedridden and I possibly could get better, but I might not. In fact, the odds are in my favor that I won’t get measurably better.
If I were a double amputee, I’d still be able to ride around in a wheelchair, get out, go to the gym, maybe even become an athlete. But with POTS I get tired sitting up because my heart beats too fast, I can’t regulate my body temperature, I don’t sweat other than night sweats, so it is easy for me to get heat stroke, heat makes my symptoms worse, I have to nap 1-2 times a day, and I can’t empty my bladder all of the way, so it’s round-the-clock bathroom visits.
I also have issues with gastric motility, as well as eating, I have to eat small bites at a time, especially complex carbs and foods that are harder to break down because, if I don’t, too much blood rushes to the digestive area and too much pressure is put on the vagus nerve, this drops my blood pressure, raises my heart rate, and sends me into an adrenaline rush that is almost painful.
I’m attached to an IV two hours a day, five days a week…..after sex, I have to sleep an entire day to recover, same for going shopping for an hour in my wheelchair or visiting my beloved mini horses….
I have 18 different health conditions, like many spoonies, I am not limited to just one. This means I take multiple medications that interact with each other, but it’s more important to take the meds than not.
An amputee or paraplegic probably doesn’t take as many.
“My partner should leave me.”
I don’t have anything to offer anymore. I feel like too much of a burden. I can’t keep house, cook, or have sex. I’ve put on weight, I’ve taken off weight, my hair is falling out, my complexion is gray. I can’t go out, I’m always sad, my meds make me so angry, and I’m not the person he fell in love with.
I don’t cancel plans because I hate people, I cancel plans because my body doesn’t want to cooperate with me.
I’m in this bed, people are in the house, life is going on in my house, life is going on outside, but time stands still for me.
I’m lonely because no one understands, they think I exaggerate or want attention. If I hobble in with my cane and they ask what is wrong, I tell them my a rheumatoid arthritis is flaring, then I have to listen to them tell me about how they know someone who has it in their pinky…..um, no…..not the same, this is an autoimmune disease, it’s systemic, it affects even my organs.
If I tell them I’m suffering from an intracranial pressure headache, I get to hear about their sinus pressure headaches….no, not the same. I’m not trying to invalidate them, sinus pressure sucks, but intracranial pressure means my brain is LITERALLY under too much pressure from my spinal fluid and it’s sort of being smushed a bit…
I miss conversations, but what do I even have to talk about?
I’m lonely every time someone asks me why I’m negative because it’s a reminder of how alone I am in my life experience.
The worst kind of lonely is being lonely in a room full of people.
“I feel completely and utterly betrayed.”
I feel betrayed not only by my own body, but by most everyone that I loved and trusted because when I got sick, they disappeared.
I feel betrayed by the medical community that is supposed to be helping me, that is supposed to do no harm, but instead has treated me like a drug-seeker. Before my body showed any outward signs of my RA coming out of remission, the pain was far too real, and while my body was attacking itself and destroying my joints, they denied me pain relief.
All this despite my many diagnoses.
And it’s not like I have no medical history, I have significant history backed up by many specialists, including specialists at The Mayo Clinic and Mt. Sinai. But they treated me like scum and left me for over a month to suffer. I’m still suffering.
Imagine breaking a few bones in your body but just having to stay home and deal with the excruciating pain because there is nowhere for you to go to get help. Now imagine family and friends tell you to snap out of it, suck it up, stop being a hypochondriac, if you would only be a bit more positive, lose some weight, work out, perhaps take some cod liver oil supplements like Aunt Sally’s friend, your broken bones would magically heal, and you could quit being such a bummer!
“You know happiness is a choice! Pop that femur back in your skin. Come on and turn that frown upside down!”
Welcome to Spoonieland, fasten your seatbelt, it’s going to be a painful ride.
Original featured image “Woman Resting”: Photo by Jordan Bauer on Unsplash