10 Things Every Caregiver Wishes You Knew
Today we're doing things a little bit differently. I'm switching gears from writing to caregiving. We're gettin’ vulnerable up in this bitch! You guys probably already know that about eight or so years ago, my fiancé Cliff broke his spine. While he has recovered from the break itself and can walk and function normally, he suffers from a condition known as CRPS or Complex Regional Pain Syndrome, which in short is the most painful condition in the world. Lovely!
I am Cliff's caregiver, which means that I take care of him when he is not able to take care of himself. Like most caregivers, I also have a full-time job, which is writing books and making these videos right here for you to enjoy! This means I have a lot on my plate, and while Cliff really wants to be active in all parts of our lives, he's not always able to because of his chronic condition.
You probably know that recently, I had to take a couple of hiatuses due to some family matters, including Cliff's health, and during these hiatuses we received an outpouring of support. Thank you guys so, so much for the kind words! We really appreciate them. But amid the positivity, there's always a few misconceptions in the mix, and that's what we're talking about today. I'm going to break down the 10 things every caregiver wishes you knew before you spoke to them.
Disclaimer: I am specifically talking about the word ‘caregiver’ from a medical perspective, as in someone who looks after another person who is sick or disabled. That means this list doesn't necessarily apply to parents, nannies, or people who look after healthy elderly people. None of this is directed at anyone in particular, certainly not my loving, adoring audience! My intention is just to give you an inside look at the emotional state of a caregiver. That way you can help make things easier for us, or at least avoid putting your foot in your mouth.
On to the 10 things every caregiver wishes you knew. Please, please, please take these things into consideration before speaking to us. Our lives are hard enough.
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Number 1: I'm Not an Angel.
“Wow! Cliff broke his spine and you stuck around? You're an angel!”
Uh, yeah! ‘Cause I'm in love with him. That's what you do when you love someone; you take care of them when they need you. Does the phrase “in sickness and in health” mean nothing?
The fact is, I'm not an angel for being a caregiver. I'm doing what any decent human being would do for someone they love. You make sacrifices for the people you care about. And if this doesn't resonate with you, if your love is conditional despite promises or vows or their actions or care, then you're a piece of shit.
Number 2: But I'm Also a Human Being.
Not a liaison for my fiancé. I've got enough on my plate being a caregiver, attending multiple doctor appointments a week, and running a business, as well as a household. I don't need to deliver your messages to Cliff or give you updates about his health or be your waitress when you decide to visit him. I also don't need you to dictate exactly how I should be caring for him. After all, I have known him for 13 years. I got it covered! Caregiver does not mean servant, and that goes for any kind of caregiver, even outside the medical capacity. I'm caring for him, not you, so back the fuck up.
Number 3: We Get It, You Care.
There are a lot of people, mostly acquaintances, who check in every few months.
“How are things? How’s the weather? How’s Cliff's health?”
Still sick! That's how chronic conditions work. Then I gotta sit and listen to a spiel about how strong I am... I am tough. I'm amazing. I'm superwoman.
We get it, you care. We can skip the whole song and dance. It's not that you shouldn't ask, it's just that I literally have this exact same conversation every single day. You can only say the same thing so many times before it makes you tired.
And it's usually innocent! The person asking wants you to know that they care. But Pro Tip: keep this part of the conversation brief. Sickness is a downer, and it’s literally a 24/7 part of my life. How about instead of beating it into the ground, we talk about books, or writing, or the latest gossip at work? Entertainment is a very welcome distraction.
Number 4: We Know When You Don't ACTUALLY Care.
At least half the people I mentioned in the last point usually pop up every few months, talk a lot about how they care, and then disappear once shit hits the fan. If you genuinely cared, you'd stick around for the hard moments. You'd be here when I actually need someone to talk to. A quarterly check-in to say, “Hi! How's Cliff doing? You're an all-star!” is just ticking things off of your to-do list.
“See? I pretended to care! Now I can go play video games!”
Obviously, this doesn't apply to everyone, but typically the people who actually care check in a bit more regularly. They talk about shit other than Cliff's health, and when they do talk about Cliff's health, it's usually with the intention of, you know, helping. For those who vanish whenever shit gets hard, we know you're not actually interested. You don't have to pretend.
Number 5: Google It!
I've spent the last eight years learning everything that I can about spinal cord injuries, burst fractures, the nervous system, neuropathy, and CRPS. Shit's complicated! It's also, as I've already stated, a part of our lives 24/7. We don't get the luxury of escaping it. So when a stranger or an acquaintance comes around and asks me to explain it to them in full, I'm gonna pass. Google it ya damn self!
It's not personal, and I genuinely appreciate that you want to learn about Cliff's condition. But imagine swimming through a sea of diarrhea and the moment that you reach land, someone throws a bucket of diarrhea right in your face. Give me a fucking break. The Internet has a wealth of knowledge available. Utilize it! I sure have.
Number 6: We Can't Just Take a Vacation.
“Jenna, your life is so hard! You and Cliff deserve a vacation!”
I know, right? Too bad it's literally impossible. Some chronically ill people can go on vacation. Others can't. And some maybe can, but the process is so extremely difficult that it makes the vacation more work than relaxation, thus defeating the point.
We fit into the latter category. That means as much as we want to relax, we don't really have that privilege. Do you really think Cliff's disorder is going to miraculously disappear for a week just because we're going on vacation? I don't think so!
“But Jenna, why don't you go on vacation by yourself? You know, ‘you time!’”
Sounds like a good idea! Are you gonna take care of Cliff while I'm gone? Didn't think so! Also, this may surprise you, but I'd much rather go on a vacation with Cliff, since, you know… I love him. I kind of enjoy his company. All of this is true not only of vacations, but also taking a break or implementing self-care. That's a luxury not everyone gets to indulge in, and rubbing it in our faces isn't the kindness you think it is.
Number 7: Sometimes It Does Define Us.
It's very important to understand that injury, illness, and disability does not define a person. Except when it does. By that, I mean there is a minority of individuals whose disability is so severe it affects every aspect of their lives.
This is especially the case with chronic pain disorders like CRPS. Many chronic pain sufferers have to learn how to detach their sense of self from their pain, since the two get very enmeshed. That's not to say that you should ignore the statement that a disability does not define a person, but it is important to know that one size doesn't fit all. Some disabilities do have a monumental effect on a person's life, so if they're not able to attend your wedding or hang out at a boy’s night, try not to throw a tantrum. Don't you think they'd much rather be hanging out with friends as opposed to writhing in pain? I think so!
Number 8: Looks Can Be Deceiving.
Not all disabilities or illnesses are visible, contrary to popular belief. Just because a person looks healthy, doesn't mean they are. So maybe if someone is parked in a handicapped spot but they don't ‘look it,’ shut your trap before accusing them of faking it! You know what’s a great habit to pick up? Minding your goddamn business.
Number 9: Have You Tried NOT Giving Unsolicited Advice?
I cannot emphasize this enough. I know you mean well, but oh my God! Whenever people give unsolicited advice it's always the most obvious thing.
“He suffers from chronic pain? Have you tried Tylenol?”
Wow, I never considered… Tylenol.
“What about cannabis?”
We live in California, but sure, never crossed my mind!
“How about an ice pack?”
Curing a broken spine with an ice pack? Genius!
We have seen about 20 different doctors from all different specialties. We have tried countless medications, surgeries, injections, herbs, supplements, everything you can think of! I promise we've got it covered. I appreciate your care and concern, but the suggestions probably aren't gonna help.
Number 10: Empathy Goes a Long Way.
Don't try to fix the problem, because you can't. You don't need to give medical advice. You don't need to send me articles or to call me a superwoman or an angel. Just empathize! It can be as simple as saying, “Wow, that sounds really hard! I'm sorry you guys have to deal with that.”
You can offer to lend an ear when I need to vent. And if you know someone who's sick, or you know a caregiver in your personal life, and you have the ability to make their lives easier, do it!
My parents are so amazing. Every time they go grocery shopping, they text me and Cliff and ask if we need anything, as well. We send them our list, they pick up our groceries, drop them off to us, and we reimburse them. It may seem like a small task; they were already gonna go to the grocery store. But I'm a businesswoman and a caregiver–my time is already strapped as it is. And Cliff isn't always well enough to leave the house, let alone go grocery shopping. Picking up our groceries gives me some extra time to sleep and it gives Cliff the ability to do some of his physical therapy at home. Basically, it's a big deal to us, and those little things go a long way.
So that's all I've got for you today!
These are some things to take into consideration if you've got any caregivers in your life. They've got a lot goin’ on, so don't be stupid!
What’s your go-to way to show support to your loved ones when they're experiencing difficulty? I love to hear it!
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