“What’s the scariest thing you’ve ever done? Or another way to say is what’s the most dangerous thing you’ve ever done and why did you do it?”
That’s how Canadian astronaut Chris Hadfield opens his TED Talk, during which he shares his harrowing tale of going temporarily blind while working outside the International Space Station. I don’t know about you, but I’d pee my pants. Space is terrifyingly awesome and the simple thought of being in such a situation makes my head spin. But, Hadfield made it through the entire extravehicular activity. How? He argues it’s because astronauts are drilled and trained to recognize the difference between perceived fear and danger.
I’d argue that illness has a similar effect. Most people can think about what it must be like to float weightlessly in space just as well as they can think about what it might be like to fall ill with something that you will never be cured of. It’s foreign, alien, and unknown. But, unlike finding yourself blind in space, illness can strike any family and any group of friends. It’s the big gorilla in every room that no one wants to ponder. Which is why Hadfield’s experience can help those facing illness tackle the fear they see in the mirror, and the danger lurking in their own DNA.
I don’t think that any sick person can say they are the same person before and after diagnosis. I’ve always battled anxiety, but my journey to finding out my brain is malformed changed me in so many ways, some I’ve yet to discover. Knowing that you will forever battle your body can be a hopeless kind of situation; I remember the moment I realized that there would be many nights where I could not feed myself, could not walk under my own power, and would have to make sacrifices that others can never understand. I spent a good, long while being afraid of every headache and doctor’s visit, of being alone, going without medication…of simply being afraid of everything. But, that’s not living. That’s wading and trudging, not living. This understanding is the line drawn between fear and danger
Continue reading “Fear, Danger, and Illness: What We Can Learn From One Astronaut’s Experience”
Working with teens and kids means I have a lot of conversations about language and the power of words. But, more often than not, it’s the adults I’ve encountered that end up putting their foot in their mouths. Part of this blunder can be traced back to the stigma surrounding illness and our silence as sufferers. How will anyone know what you go through every day unless you share a bit about your experience? I learned long ago that trying to keep your illness a secret is so much more destructive than the perceived danger in sharing. I narrowed my list down to five mistakes people make and how to turn those phrases into caring statements or questions. Don’t miss the links at the bottom of the post to other great resources for those struggling to talk about chronic illness!
- “Get well soon!” – Unfortunately, pills and even surgery won’t push my brain back where it’s supposed to be. This is said with good intention, but it only conveys how little people understand about chronic illnesses. Chronic is defined by Dictionary.com as “persisting for a long time or constantly recurring.” No amount of rest or injections will make me better. Instead, try something like “I hope the pain lets up,” or “I hope your medication is helpful.” Recognize that there’s no cure, only varying degrees of the illness.
- “My Aunt drank Kale smoothies in a magic well and cured her polio!” – That doesn’t happen. Or, if it does, I seriously need to hunt for a magic well. Every illness is as unique as each person living with it, so don’t assume that this person has obviously never thought of bathing in vegetables. Most of us would trade anything for a cure that simple. Treatments are chosen for certain reasons, and most illnesses require several different combinations of treatments. If you’re wanting to offer advice to a sick friend, you might want to familiarize yourself with their illness, and ask if anything specific helps. If I tell you I’ve had 12 nerve block injections for my migraines, don’t ask me if I’ve tried Tylenol.
- “Why don’t you sit in the back for five minutes?” – My brain is falling down my spinal column, but by joe I think sitting in the dark for five minutes is absolutely what I need! One of my previous bosses used to ask me all the time if I needed to lay down in our break room for a couple of minutes, surrounded by her perfume, to get rid of my migraine. No. Things like caffeine, or cold and hot compresses can sometimes help. Ask if there’s anything you can get your ill friend, rather than diagnosing their problem for them.
- Any blanket comment about their lifestyle is absolutely wrong. My neurologist recommends Gatorade for bad flare days; it helps give your body a boost and helps offset some negative medication side effects. My old boss used to say things like, “Those drinks are bad for you,” or “Do you know how much sugar is in those?” Sick people don’t want to be sick. It is never your place to tell that person how to live. If you’re concerned about why they are doing something, ask before you put on your invisible physician coat.
- Any assumption about ability is discrimination. I’ve faced people who have openly told me they think I’m faking. I’ve missed out on meetings and opportunities, because workplaces have told me “I assumed you wouldn’t be up to it,” or “I figured you’d be wiped out.”
The main message: ASK BEFORE YOU LEAP. Don’t put your foot in your mouth.
This is one of the main reasons I’ve become much more open about my illness. If people feel I am comfortable talking about my malformation, then they are much more likely to ask a question rather than force an ignorant statement on me.
Other resources for talking to chronically ill friends, family members, or coworkers are out there. I’d recommend:
Part 2: What the Chronically Ill DON’T Want to Hear
20 THINGS TO NEVER SAY TO A PERSON IN CHRONIC PAIN
15 THINGS NOT TO SAY TO SOMEONE WITH A CHRONIC ILLNESS OR INVISIBLE ILLNESS
What’s your biggest chronic pet peeve? What have you done to combat it?
You’d think that being chronically ill prepares you for any sickness, but it doesn’t. Take me for example; I’ve spent the whole week cooped up in my apartment with the flu. And Husband will back me up: I am world’s worst sick person. Brain malformation I can cope with (kinda). The flu? Nope. That’s partly because any “normal” illness zaps my already depleted energy supply. Thankfully, I have Husband (who makes excellent tomato soup) and cats who surround me with purrs. It really reminded me, though, that dealing with average ailments on top of other maladies requires a plan. In my mind, my “I just puked up chocolate chip waffles” plan and my “I wish my brain was in the right spot” plan are two different things. What do spoonies do when they get sick? Do you have a plan? Read on for seven tips to get you through your sickness!
Why do chronic illness sufferers need a plan for average sicknesses? Think of it as another facet of self-care. You probably have a plan for flare ups and bad days, but this is taking it one step further. The biggest reason I found for making a plan is your energy level. A normal person might be able to fight off the flu in a couple of days, but since my body already functions on a less than normal scale, it takes me so much longer to get better and recover. Being sick and ill at the same time just adds insult to injury; it’s hard enough to take of myself on a good day!
Spoonies also have to take routine medicines into account. I can’t take certain flu medicines because they interact with meds I’m already taking. That right there limits my treatment options. I also cannot get the flu vaccine because of complications. There’s also routine tests you might experience to rule out your illness. I don’t know how many times I’ve had strep throat and every time I have blood work done to make sure it’s not my thyroid acting up.
Show Your Sickness Who’s Boss
- Drink fluids – Viruses wreak havoc on your body. Becoming dehydrated will only make it worse, so drink up! Especially orange juice; vitamin C can help kick your sickness in the ass!
- BRAT diet – Growing up, my parents always fed us the BRAT diet when we were ill. It stands for Bananas, Rice, Applesauce, and Toast. These foods don’t really bother your stomach and provide your body with carbs.
- Turn on Netflix and veg – Try to limit your activity. I stayed snuggled in my bed and watched Lucy Worsley documentaries with my cats. It’s all about conserving what little energy you have.
- Sleep – Help your body fight by resting. You need all the energy you have to get better, and nothing helps you recharge like sleep.
- STAY HOME – The CDC actually recommends that sick people “stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. (Your fever should be gone for 24 hours without the use of a fever-reducing medicine.)” I am one of those people that hoards sick time but working with kids ups the chance that I could spread it to someone else.
- Contacts – It doesn’t matter if it’s a family member, a friend, or a coworker, but having someone who can stop at the grocery store for OJ and chicken noodle soup helps out so much. Husband is amazing, but there are times when my mother in law has had to take me to my general practitioner. It makes a huge difference, though.
- Call your doctor or pharmacy – If you’re concerned about a medication problem, or if you should continue taking a certain medication while sick, call your doctor your pharmacist and ask about interactions. Better safe than sorry!
What do you do to beat the flu or a cold? Share your tips and advice in the comments!
For most of my adult life, I have led a compartmented lifestyle. My illness was like a terrible skeleton I had to stuff into a closet and lock away, never to speak of again (or at least not publically). Part of this response, I think, was driven by attitudes of medical professionals. But, I also dug a deep hole for myself by thinking I could manage everything on my own, without changing my lifestyle. I paid the price for my silence, though. My struggle stripped me of my identity, my self-respect, and my voice.
That’s when I started blogging. Looking back now, it is the most important decision I have made with regards to how I live with my illness. Growing up in the ’90s, we all had Angelfire sites and Livejournal blogs, which is probably why I turned to the net as an avenue for coping. Besides my obsession with TMNT and YA fiction, my Tumblr account slowly started sporting graphics aimed towards the chronic community and before I knew it, I was sending emails all over the world. This powerfully positive experience leads me to believe that more chronic illness experiences need to be shared for three reasons:
- Self-Care, People! – The power of writing and sharing can be an enormously restorative practice.
- Building Support – Connecting with others and forming your support ring is key to living with your illness, rather than suffering through it.
- Fight for Your Rights – Illness needs a voice! Stereotypes keep us from sharing vital information that could lead to increased awareness and public action.
I’m by no means saying that this is easy. Talking openly about my illness has no doubt changed how some people perceive me. The positive and reaffirming conversations I’ve had, though, far outweigh the negatives. And, don’t think that this information isn’t beneficial to healthy people; no matter if you’re a friend, partner, caregiver, or a member of the medical profession, everyone can take something away from this post!
Not only is September Suicide Prevention month, but it is also Arnold Chiari Malformation Awareness Month! Speak up and join the conversation on social media!
Read on to see how you can start blogging and making a difference!
Continue reading “Why Chronic Blogging Matters”
“Oh, I get headaches, too! I’ve got an IBUProfen, do you want one?”
The first thing I learned after being diagnosed with a chronic illness is that it is incredibly difficult for people to understand. When I say “migraine,” most people hear “bad headache.” But, migraines are so much more than most people can even begin to describe. And while you might mean well by offering an Ibuprofen to a friend or loved one who suffers from chronic migraines, chances are they’ve already tried most pain relievers on the shelf. The best thing you can do is offer your support and willingness to learn. So, today I’m going to pick through my migraine experience and share my defense plan that gets me through my work day in the hopes that it will help sufferers and friends alike.
If you have any questions, please feel free to ask in the comments!
We’re actually quite lucky here in the 21st century. Cavemen and 17th-century sufferers alike drilled holes in their skulls to alleviate severe pains and pressure. Trepanning, as it was called, is one of the more gruesome treatments people turned to, but consider the pain that a human body must be experiencing for this “solution” to even be a consideration! I can tell you from personal experience, pain can push you to a point where opening a 6-inch hole in your head seems like a good idea. But, pain inside your brain is inescapable; it’s not a bum knee that you can prop up, or a bad back you can ice. It’s all consuming and can distort your version of reality. It makes sense, then, that people have turned to electrotherapy, vessel ligation, and other incredibly invasive procedures to cure their migraines. What causes them, though? Why do people even have migraines?
Continue reading “What I Mean When I Say “Migraine” + Dealing At Work”