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.
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