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Filtering by Tag: spoonie

Invisible Illness Awareness

Davis Orr

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Here's a little Invisible Illnesses Awareness to kick off your weekend!

Oh my gosh, you guys… I’m excited for today’s awareness blog post. I’ve received quite a few emails since my post two weeks ago about chronic illness and my synopsis of Spoon Theory. To be completely open with you all, it was a really important blog entry for me to write as someone who falls into the #spoonie category. Like many of you, I have struggled to find the words to accurately explain what chronic illness feels like to friends and family. When I found Spoon Theory, it was like all the sudden everything clicked. It’s powerful to be able to feel so represented by another person’s experience, and I was so grateful to finally have something to forward to people that captured the essence of the daily struggle. Finding the words to explain my chronic illness was difficult until I found Spoon Theory, and finding the #spoonie community was a complete game-changer. When you’re deal with multiple diagnosis, and rare conditions or abnormal presentations of illnesses, it can start to feel like you’re some kind of one-in-a-million freak. One of the greatest comforts I have found in the #spoonie community is that I’m really not that special. That sounds like a negative thing, but it’s actually very liberating to feel like there’s a group of people out there who are all just like you. You’re not the only weirdo, there’s actually a whole bunch of you. It makes the world suddenly less lonely, your conditions less scary, and it allows us to feel understood without explanation, finally. So, today’s awareness blog entry is going to expand on the chronic illness topic, because I see that it has connected with a lot of you.

Today we’re gonna talk about invisible illnesses/invisible disabilities. A huge chunk of the chronic illness community is suffering from an invisible illness or invisible disability. Invisible illness can sometimes be more difficult to deal with socially, because you get a lot of people who don’t take you seriously since, “you don’t look sick.” Not “looking sick” can be a double-edged sword. On the one hand, it’s nice that you can pass as a healthy person. It gives you a certain sense of freedom to be able to choose with whom you share your story, because others will not recognize that you are sick. There’s kind of a luxury to being able to go back and forth between the realm of the healthy and the realm of the chronically ill. It’s kind of like being a spy. You have a double life. On the other hand, it can make things much more difficult. In my own experience, I have had to convince people that I was actually sick. People assume that you are either weak or exaggerating since there are no physical signs that you are suffering. Another really fun assumption that people make about you is that you’re not experiencing fatigue, you’re just lazy. Even doctors, who should know better, sometimes don’t believe you. It’s pretty sucky to have to prove that you’re a member of a club that you don’t want to belong to in the first place (chronic illness/invisible illness being the club).

I’ll quickly share a personal story, which I don’t normally do, but it illustrates the issue. A couple months after I got my license, I decided to drive down to the coffee shop with my brother. I had been very sick and hospitalized off and on for months before that. Going to the coffee shop was a big outing for me at the time, sadly. I had a handicapped placard, which I needed. When I got there, I parked in a handicapped spot. There were a couple other handicapped spots open, but the regular spots were all full. When my brother and I got out of the car, a group of older people (seniors) started loudly talking to each other about me, essentially calling me a disrespectful teenage dirtbag (I was an honor roll kid, not a thug). As we got closer to them, one of the women started shaking her head at me in disgust, and said, “You know you can get a ticket for that, I should call the police.” I was completely frozen. I was so shocked that this group of adults was shaming me, and I didn’t know how to react. I was so full or rage and scared at the same time. What if the police came and didn’t believe me either? My brother looked at the woman and said, “She needs to park there.” I was relieved he said something because I didn’t know what to say. The woman then said, “She sure doesn’t look sick,” to which I replied, “thank you,” and walked inside. I could see that my response made her recognize that she had been wrong. The group quickly left before we came back out. This may not sound like that big of a deal, but there have been hundreds of situations like this in my life. Let me tell you, over time it fills you with anger and anxiety, and makes you defensive by default. It sucks to have to explain yourself to strangers that don’t deserve to know anything about you. It sucks to be judged by people who assume you’re a crappy person when you encounter them, while just trying to live your life. This is just one example of a scenario that people with invisible disabilities face constantly. It’s why this awareness blog is so important to me.

Enough about me, let’s get clinical. Invisible disabilities are usually caused by chronic illnesses. Having an invisible disability means that your normal daily activities are significantly impaired. Wanna hear a surprising statistic? Something like 96% of people living with a chronic illness do not have any outward signs that indicate that they are sick. That’s a gigantic number of people who are living with invisible illnesses. About 10% of people with a chronic illness are considered to be disabled from it. Invisible illness can be defined as a mental, physical, or neurological condition that impairs the person’s ability to move, affects their senses, or inhibits their ability to perform daily activities, that is not readily apparent to an onlooker. Having an invisible disability does not necessarily make the person disabled. That is an important distinction because sometimes people with invisible disabilities can often still work, maybe part time, or with accommodations. Sometimes the disability will improve and sometimes its severity will wax and wane. Each person’s unique invisible disability will affect them differently. So, just because you know one person with MS who was able to go back to work, doesn’t mean another person with MS struggling with an invisible disability will be able to. Many people with invisible disabilities are still active, and maintain involvement with their family and friends, even hobbies or sports.

Invisible disability symptoms can be chronic pain, chronic fatigue, cognitive impairments, or cognitive dysfunction, weakness or dizziness, brain injuries, mental health disorders, learning disabilities, hearing or visual impairment, and the list goes on. One of the major struggles for people with invisible disabilities is that people tend to have higher expectations of them because they cannot see, or forget that the disability exists. As a result, there are often issues with miscommunications, misconceptions, and misunderstandings. Never judge a person by what they look like. A person may look like they are unable to do something, when they are actually completely capable of it. Likewise, a person who may look capable of something may not be. Disability does not depend on outward appearance. Remember that.

Thanks for reading! I hope this unusually personal awareness blog entry helped to shed light on what it can be like for people living with invisible illnesses or invisible disabilities. I hope that some of you feel like I captured an important aspect of life with chronic illness well, and accurately. Feel free to send me an email about it. =)

See you all next week!

If you’re a first time reader, let me take a minute to tell you a little bit about ourselves and why we started this awareness blog. We are Personalized Cause, an awareness accessory company specializing in custom awareness ribbons. Custom awareness ribbons are a unique product that allow our customers to personalize their awareness ribbons with any name, date or message they want. Custom awareness ribbons come in all colors, and are engraved with your choice of personalization. Custom awareness ribbons are a wonderful way to express support when you may not know what to say. Awareness ribbons are a powerful symbol of hope and inspiration to others, as well as the person wearing it.

At Personalized Cause, we believe in the power of awareness. We have seen how one custom awareness ribbon can impact an entire community, and create a culture of compassion and understanding. Raising awareness is our mission. Only through raising awareness do we make progress in funding, research, and cures. We want to empower you, through our awareness products, to become an advocate for yourself or others. We use our awareness blog as a way to educate people about health issues that affect millions of people, in hopes that it may help them to recognize symptoms and prevent illness. We hope you’ll come back next week for our next awareness blog entry.

Invisible illness is represented by a peach awareness ribbon. To order a custom peach awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/peach-awareness-ribbon-pin-personalized?rq=invisible%20

#invisibledisability #chronicillness #chronicpain #chronicfatigue #spoonie #spoonielife #invisibleillness #awareness #awarenessribbon #awarenessribbons #cancerribbons

Chronic Illness and "Spoon Theory"

Davis Orr

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In honor of all the chronic illnesses that we raise awareness for in the month of May, let's address the question: What is a spoonie?

Hey, there! So glad you stopped by, friends! Hope everyone had a wonderful weekend. I trust it was full of some quality R&R, and maybe a little bit of throwing caution to the wind. We all need that every now and then, especially with all this gloomy weather and summer right around the corner. This is always the hardest part of the year for me because it seems to take the longest. Must be all the anticipation of warm nights and not having to wear two pairs of socks to sleep to keep warm. That, and I’ve got some dresses I’m dying to wear. But, enough about me…

Today’s awareness blog topic was chosen after we received a few emails asking us about our “Spoonie” pin, featured of our home page. If you’re active in the online chronic illness groups on social media, I’m sure you’ve noticed the hashtag “#spoonie” used pretty often in reference to chronic illness. I know that when I first got involved with Personalized Cause, I was unfamiliar with the term and seemed to see it pop up everywhere like some kind of inside joke everyone was in on besides me. But, after doing a lot of digging on the interwebs, I was able to find the original article that the hashtag was born from. So, today, I’m going to explain Spoon Theory to you guys, so that we are all in on the joke. That way all my chronic illness people out there can start using is with reckless abandon, without having to guess if they are using it correctly.

First, let’s talk a little bit about chronic illness, since understanding chronic illness is key for understanding Spoon Theory. So, what exactly qualifies as a chronic illness? Excellent question! There are a lot of misconceptions about what defines someone’s health struggle as a chronic illness. I’ve heard people say that an illness is only considered a chronic illness if you become disabled from it. That could not be farther from the truth. I’ve heard people dismiss symptoms of chronic illness and blame their inability to do something on being lazy because “they look fine.” This is a common stigma people with chronic illness face. Often times, people who don’t understand what it’s like to deal with a lifelong health struggle can be dismissive, belittling, and trivializing. People who suffer from chronic illness deal with sometimes debilitating fatigue. It is physically draining for your body to constantly be fighting to maintain and function. It costs way more energy for someone with a chronic illness to complete daily tasks than a healthy person when their disease is active. Unfortunately, people who don’t have a chronic illness themselves don’t always understand this. As the saying goes, “people don’t get it, until they get it,” meaning that the only way for someone to understand what it’s like to have a chronic illness is for them to experience it themselves.

A chronic illness is defined as a disease that is ongoing for over three months. The reality of the situation is that most chronic illnesses last a lot longer than just a few months. Most chronic illnesses are lifelong struggles, or may come and go in episodes, or flare-ups. Because it can be discouraging, upsetting and exhausting to deal with a chronic illness, one of the most commonly experienced complications is depression. A huge percentage of those suffering from a chronic illness also struggle with chronic depression due to the stress and anxiety, or even anger caused by a health issue. It is important to treat the depression on it’s own, and not just hope that by treating the chronic illness, the depression will be treated as well. People can continue to struggle with the depression brought on by chronic illness even after they are feeling better. Some examples of chronic illnesses are things like cancer, asthma, autoimmune diseases, diabetes, HIV/AIDS, COPD, hepatitis, etc. The list goes on and on.

Chronic illnesses usually cannot be cured (with some exceptions), but can be managed with appropriate treatments and lifestyle changes. Sometimes people experience long periods without disease activity, and some people are never completely symptom free. Each chronic illness is very unique in how it affects the person who has it. Chronic illness can be extremely overwhelming, and may make some people unable to work, or even care for themselves. People often make the mistake that people who have a chronic illness but look healthy are fine. Looking healthy and being healthy do not necessarily come as a package deal. The former can certainly occur without the latter. Just remember that you don’t know what it took for that person to appear healthy. They may have spent hours trying to achieve that, whereas others can just wake up looking that way. People who have chronic illnesses can experience chronic fatigue, chronic pain, disability, insomnia, and more, which all drain their energy.

Now that we all understand a little more about chronic illness, I think we can get to Spoon Theory. I’ll include the link to the original article by Christine Miserandino at the bottom of this post.

The article starts out by setting the scene. The author describes the moments leading up to the origination of the spoon theory. She was a normal college girl, with her roommate, eating fries at a diner and chatting about this and that when suddenly her roommate asked her what it felt like to have lupus. Her roommate had watched her live with the disease for quite some time, and so she had assumed that she understood the ins and outs of the disease. But that wasn’t exactly what she meant. She wasn’t curious about what lupus was and the symptoms it caused, rather, she was asking what it felt like to be Christine- a person battling a chronic illness. People with chronic illnesses get this question a lot. It’s very difficult to put into words what it feels like to be sick. It’s even difficult to find the words in your own mind. Nothing quite describes it, and you’re left with an answer that’s as close as you could come. When I was younger, I used to try to practice explaining what chronic illness felt like, so that when my friends asked I could answer them accurately. I was never able to formulate a sentence that really embodied the experience. And so, like Catherine, I would try to invent metaphors for it.

Catherine’s metaphor of living with chronic illness was inspired by her surroundings at that diner; she grabbed as many spoons as she could from the surrounding tables and handed them all to her roommate, proclaiming, “Here you go, you have lupus.” The difference between a healthy person and a person living with chronic illness is represented by this spoon metaphor. Healthy people have a limitless supply of spoons; someone suffering from a chronic illness has a finite supply. When you have a disease like lupus, everything you do must be deliberate. You have to be meticulous with the way you do things, in order to get through the day. You have to choose what to spend your energy on in order to get through as many things as you can. The spoons represent the energy required to perform a task. Say you have 12 spoons of energy, and you have a normal day of college ahead of you. How do you spend those 12 spoons in order to make it to school; Keep in mind, everything costs something. What do you forfeit? Getting out of bed, that’s one spoon. Taking a shower, that’s another spoon, if not two. Getting dressed, another spoon. Brushing your teeth, spoon. Putting on makeup, spoon. Making breakfast, spoon. It adds up so much quicker than you think.

It all came down to this one last task for the day: dinner. If she made dinner herself, there wouldn’t be enough spoons for her to clean up, and if she went to pick something up, she may not have enough spoons to drive home. This little example is actually a very accurate dilemma for someone with a chronic illness. So, what do you do? You grab something out of the fridge, and heat it up. That’s all you can afford with your remaining spoons. From day to day, the number of spoons you start out with may go up a little or down a little, but it’s relatively constant. The takeaway of spoon theory is this: you cannot do everything you want to do; you have to choose, everyday, what to spend your spoons on. The people who face this daily struggle have adopted the term “spoonie” as a nickname for chronic illness sufferers.

I highly recommend you check out the original article. It’s a quick read, and Christine does a wonderful job of conveying the frustration people with chronic illness feel. I hope that helped to quickly explain Spoon Theory in a way that’s easy for people without chronic illness to understand.

And with that, I’ll wrap it up. If you’re a new reader, please read the last paragraph, or so, so that I can explain who we are and why we’ve started this awareness blog. Veteran readers, catch you next time, I hope you enjoyed today’s post.

Personalized Cause is an awareness accessory company based in California. We specialize in custom awareness ribbons. We are the only company that offers customers the option to personalize any color awareness ribbon they choose. Custom awareness ribbons can be personalized with a name, date, phrase, or message. Our custom awareness ribbons are engraved on cloisonné awareness ribbon pins. They are a beautiful way to support a loved one, or advocate for a cause. If custom awareness ribbons aren’t your thing, we also carry classic awareness ribbons, fabric awareness ribbons and silicone awareness wristbands.

We started this awareness blog because we believe in the power of awareness. We believe that educating people can save lives, and that prevention is the most important way to protect your health. We also know that not everything can be prevented, and we want to help inform our readers about warning signs and symptoms of lots of different illnesses, so that they can recognize a problem early on. Early detection is so important to having the best possible outcome. So, if you’re interested in learning a little something every week, and becoming a more aware human, check out our weekly blog.

Light blue awareness ribbons are used to raise awareness for chronic illness. To order a custom light blue awareness ribbon, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/light-blue-awareness-pin-personalized?rq=chronic%20illness

Also, here’s the link to the Spoon Theory article by Christine Miserandino:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

#chronicillness #invisibleillness #lymedisease #lupus #fibromyalgia #chronicfatigue #arthritis #ulcerativecolitis #crohnsdisease #celiacdiease #spoonie #autoimmune #diabetes #cancer #depression #HIV #AIDS #hepatitas #COPD #awareness #cancerribbon #awarenessribbon #chronicpain