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Our cause awareness blog provides knowledge and educational information to advocate for cancer, medical, social and psychological illnesses and/or causes. 

Filtering by Tag: invisible illness awareness

Invisible Illness Awareness

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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:

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

Fibromyalgia Awareness Day

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Today is Fibromyalgia Awareness Day!

Come one, come all, it’s time for another fascinating and educational installment of the awareness blog! To all our returning readers, thanks so much for coming back friends. To all our new readers, welcome! We’re so happy you stumbled across us, and decided to give our blog a read. I hope you’re all pumped to learn some knew things.

Returning readers, you know the drill. You can skip our intro and head to the good part. New readers, let me give you a little overview about who we are, and what we’re trying to achieve here with our blog. This blog is designed to raise awareness for a myriad of diseases, causes, and issues that affect people everyday. There is a seemingly endless list of causes, illnesses and issues out there and we want to help raise awareness for as many of them as we can, because raising awareness is kinda our thing. Personalized Cause is a business dedicated to empowering others to raise awareness for the causes and illnesses that are close to their hearts. Personalized Cause was created in an effort to put a name to an illness, so that others could see and understand how they had been affected by that particular cause. We know that tying a person to a cause makes people more likely to want to listen and learn about it, thereby raising awareness one person at a time. Personalized Cause is the number 1 source for cloisonné custom awareness ribbons in the United States. We carry fabric ribbons, classic awareness ribbons, custom awareness ribbons, and awareness wristbands (basically all the essential awareness accessories). Our custom awareness ribbons are our most popular product, given that they are so unique. I hope you’ll give our website a look if you ever find yourself in the market for custom awareness ribbons.

(Returning readers, here’s your starting line.)

Today, we are going to talk about a condition called Fibromyalgia. There is a lot of misinformation and misconception regarding fibromyalgia. People who aren’t familiar with fibromyalgia tend to think that fibromyalgia is something that happens when people are depressed or lazy or don’t exercise, and sometimes blame people who have the condition for bringing it upon themselves. Let’s put a stop to that, shall we?

Fibromyalgia is a condition that affects the musculoskeletal system, causing widespread pain throughout the body, and may also cause fatigue, mood, memory and sleep. Fibromyalgia intensifies the sensation of pain in the nerves and muscles. It is believed that the source of the pain magnification stems from the way the brain processes pain signals in the body. The pain that people who suffer from the condition is as real as the pain that those who do not have fibromyalgia feel. It is not made up. It is not exaggerated. They are not weak people. They do not need to toughen up or walk it off. I hope I’ve made myself perfectly clear on that. (All you people out there suffering from fibromyalgia, I got your back.)

Fibromyalgia can be caused by many different things. Some people’s symptoms arise after a physical or emotional trauma, for example a soldier wounded in combat may develop fibromyalgia after the incident, whether from the psychological stress of the event, or a physical injury suffered during it. Sometimes fibromyalgia can be caused by a surgery, or an infection. Other times, fibromyalgia comes on gradually over time with no apparent cause that triggered the condition.

People who suffer from fibromyalgia describe the pain they experience as a chronic ache, particularly in the neck, back, and joints. Fibromyalgia is a chronic condition that can come and go over a person’s lifetime, but can also last for months or years, uninterrupted. People with fibromyalgia often experience chronic fatigue, regardless of how long they sleep. Sleep is often affected fibromyalgia because the pain keeps patients from falling asleep or getting back to sleep. People with fibromyalgia often have other unassociated sleep issues, too, like restless legs syndrome, insomnia or sleep apnea.

It can also cause serious mental cognition issues, commonly referred to as brain fog in the fibro community. Brain fog, also sometimes called “fibro fog,” is described as confusion, memory impairment, difficulty following a train of thought, and trouble with staying focused. I’ve heard stories about people who drive to a destination and then can’t remember why they are there, or people who put something in the oven and then leave the house and come home to the fire department. That last one is more common than you’d think. My point is, brain fog can be serious and potentially dangerous, so it’s important to be aware that it can occur.

Fibromyalgia can co-occur with other health issues, particularly health problems that cause pain. People who suffer from IBS (irritable bowel syndrome causes pain in the stomach), interstitial cystitis (which causes pain in the bladder), TMJ (which causes pain in the jaw), and migraine headaches or other headache disorders have an increased rate of fibromyalgia.

While doctors have identified many of the triggers for fibromyalgia, they aren’t certain exactly what causes the brain the start processing pain differently. There does appear to be a link between fibromyalgia and genetics, considering that it is common to see the condition occur in many people of the same family. This could be caused by a mutation in the genes, or even a genetic susceptibility to developing the condition.

There are also certain risk factors that can make you more likely to develop fibromyalgia. Women are more likely to be diagnosed with the condition than men are. It is not known why it is more common in women than men. Family history also plays a big role in your likelihood of developing the condition, as we discussed in the last paragraph. If one of your close relatives suffers from fibromyalgia, your likelihood of developing the condition is higher. Of course, other diseases and disorders also make you more prone to fibromyalgia. Many autoimmune diseases, such as lupus or rheumatoid arthritis also come with a higher rate of fibromyalgia. Chronic conditions that leave people too fatigued to leave the house tend to co-occur with fibromyalgia.

Because fibromyalgia can be debilitating for some, there is an increased likelihood for people who have been diagnosed with fibromyalgia to develop depression, or have worsening depression during time when their fibromyalgia symptoms are worse. The lack of sleep, in addition to constant pain can cause people’s mental and emotional state to be affected. (Personally, I don’t see how anyone wouldn’t become depressed if they couldn’t get restful sleep and had to live in constant pain.)

Fibromyalgia can be diagnosed if you have experienced widespread pain (meaning on both sides of the body, and both the top and bottom of the body) for over three months, with no other conditions that could be accounting for the pain. There used to be something called the “tender point exam,” where doctors examined 18 specific points on the body to diagnose the condition. The tender test is no longer protocol for diagnosis. Since widespread pain can be a scary symptom, your doctor will probably want to rule out any other health problems that could be causing the pain by taking blood. You should definitely rule out everything before you move ahead with a fibromyalgia diagnosis because some of the things that can cause widespread pain can be very dangerous.

There are many more options for treating fibromyalgia these days than there used to be. People can treat pain with everything from over the counter pain medicines, to drugs such as Lyrica, to anti-depressants, to anti-seizure medications. They all work on the brain and can significantly reduce the pain, and symptoms of fibromyalgia. Physical therapy and occupational therapy are also very successful if the patient complies home therapy and commits to the plan. Often times, patients become discouraged when there is no immediate sign of improvement and quit physical therapy or occupational therapy. Both types of therapy are not instant fixes, and need long periods of time to see improvement. People who stick with it do report a decline in symptoms over time. It may also help to get frequent massages (you don’t have to twist my arm). There are places like Massage Envy, I think, that now accept insurance for issues like fibromyalgia, so look into your healthcare plan and see if you can get coverage for therapeutic massage. If it isn’t covered, you should call your insurance provider (I know, I know, nobody wants to be on the phone all day dealing with insurance) and see if there is anything you can do in order to qualify for those benefits.

In honor of Fibromyalgia Awareness Day, Chronic Fatigue Awareness Day, and Myalgic Encephalomyelitis Awareness Day, we recognize the very real pain and suffering caused by invisible illnesses.

And on that note, I’ll end my entry for today. I hope everyone came away from my post with a greater understanding and appreciation of people who suffer from fibromyalgia. Invisible illnesses can be tough, so be kind to yourself and those suffering.

Fibromyalgia is represented by a purple awareness ribbon. To order a custom purple awareness ribbon, please visit this link:

#fibromyalgia #chronicfatigue #myalgicencephalomyelitis #awareness #invisibleillness #chronicillness #ME #fibro #chronicpain #MECFS #cfs #fibrowarrior #fibrofighter #cancerribbons