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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: lyme disease

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:

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

Lyme Disease Awareness Month

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May is Lyme Disease Awareness Month!

Welcome back my darlings! It’s time for our latest installment of awareness raising health education. That sounds so boring. I promise it isn’t actually as boring as it sounds. In fact, I try really hard to make it as interesting and fun to read as possible. So, I mean, hopefully, it isn’t actually boring at all. Who’s ready to learn a little bit about Lyme disease?! (I imagine you’re all waiving your hands in the air and screaming “ooooo me! Me!”) Don’t worry, baby birds, I’ll feed you.

As I’m sure you all know, because who doesn’t get their health information from E! News, Bella Hadid (gorgeous model) has Lyme disease, as does her mother, Yolanda Hadid (of Real Housewives of Beverly Hill’s fame), and her brother Anwar (I’m sure he’s famous for something, but I don’t know what it is) also suffers from chronic Lyme disease. Before you roll your eyes at me for bringing up a celebrity, let me tell you why that’s actually pretty important and interesting.

New research suggests that there may be more than one way for Lyme disease to be contracted. It is widely known that Lyme disease is transmitted through the bite of a tick that carries the infection, however, there is now thought to be more than just that one factor that leads to the development of the disease. The reason for this hypothesis is because of the fact that it is not uncommon for multiple members of a family to develop the disease. If there were not other factors in play, it seems unlikely that it would be common for more than one person living in the same house to be bitten by the same tick. When I say “multiple members of a family living in the house”, what I’m referring to is that they share the same micro biome environment, and not that they were bitten by the same tick that somehow found its way inside.

Micro biomes are specific to each household and therefore people who all live together share similar bacteria in their guts. The environment shapes their health. If one person has a predisposition to a health issue, then it is likely that the others members of the household also share the predisposition. Keep in mind; we are not talking about genetic factors here, because Lyme disease is not hereditary. What we are talking about is how the environment of a group of people who cohabitate can affect their health in similar ways. A deficiency in an aspect of gut bacteria, which greatly affects our health and abilities to fight off illness, may indicate the same deficiency in other people in the house. It is not yet known how this impacts the way the disease is spread, but it is suspected that similar micro biomes and deficiencies in certain areas can cause some people to be predisposed, or more likely to develop the disease. This is about all they know so far, but I thought it might be interesting to start off with a little development in the study of the disease.

And one more thing… I know it seems stupid to care that a celebrity suffers from a disease, when there are over 300,000 people who are diagnosed with Lyme disease annually in the U.S. Why should the suffering of a celebrity matter more than the suffering of all of the other people?! It doesn’t, at all! But if you ask me, we should all be grateful for our celebrity disease ambassadors. A hugely popular celebrity has the ability to increase awareness for the disease, raise way more money for research, and generate attention on a disease that needs it. Look what Selena Gomez has done for Lupus. It might be annoying that everyone knows it as the disease that Selena or Bella or Demi has, but hey, at least they know about it at all. Trust me, celebrities who have the same disease as you don’t trivialize the disease you suffer from, or make it trendy. It makes it visible, and it makes it more likely to be funded and researched, ultimately leading to the development of new drugs, or therapies, or cures (fingers crossed). Shout out to Selena Gomez, Bella Hadid, and Demi Lovato for using their status and their platforms to raise awareness for all the people suffering from their respective illnesses.

Okay, now let’s get into the basics of Lyme disease.

Lyme disease is contracted through a tick bite. Not all ticks carry the Lyme disease causing bacteria. Generally, about a week or two after the bite, 50 to 70 percent of people develop the red rash that encircles the site of the bite. This rash is sometimes referred to as the bull’s-eye rash, because obviously it looks like a bull’s-eye. The rash isn’t usually painful or itchy, just an inflammatory response by the body. Early symptoms may include fever, fatigue, neck stiffness, muscle aches, joint pain, chills, swollen lymph nodes, and headache.

Lyme disease is also fairly localized in the United States to the Northeast and other heavily wooded areas. It is more common for the disease to be contracted in this part of the country, but not impossible to contract elsewhere. Precautions should be taken when exposure to ticks is more likely, especially in the Northeast. Some things you can do to minimize your risk of exposure to ticks, and therefore Lyme disease, are to wear pants and long sleeves, to reduce the area of exposed skin where a tick may be able to attach, or using insect repellent to discourage ticks from wanting to be near you.

Lyme disease can be tricky to diagnose, and can take years to diagnose after symptoms begin. Lyme disease’s symptoms are very similar to symptoms of many other diseases. It can often seem to mimic other diseases, especially other chronic conditions such as autoimmune diseases. Every patient’s experience is different, and not all symptoms are necessarily present for every patient. Most often, it is a combination of symptoms, but not all of them.

Signs and symptoms of Lyme disease can occur months after the tick bite. Symptoms can range from mild to severe. Because Lyme disease is a chronic condition, symptoms may come and go, and rotate.

Symptoms of Lyme disease include:

  • Short-term memory issues (also sometimes referred to as brain fog)
  • Nerve involvement, which can involve shooting pains, numbness or tingling, or nerve pain.
  • Inflammation all over the body can occur, most commonly in the joints, but also in other areas such as the spinal cord or brain.
  • Dizziness or shortness of breath.
  • Cardiac involvement- usually in the form of arrhythmias (palpitations or irregular heart beats.)
  • Neck stiffness.
  • Sever headaches.
  • Muscle pain, joint pain, connective tissue pain, and bone pain.
  • Arthritis, particularly in large joints such as knees.
  • Palsy’s, or paralysis, particularly in the face.
  • Sometimes rashes may develop, not specific to the area of the tick bite.

Lyme disease is diagnosed using a two-step process. Both steps are done using a blood sample, and can be drawn for at the same time. Both steps are recommended to be sure of the diagnosis and to prevent misdiagnosis and improper or unnecessary treatments.

Post-Treatment Lyme Disease Syndrome, or chronic Lyme, can last anywhere from six months to ongoing. Those suffering the effects of Lyme disease may become temporarily or permanently unable to work, depending on the damage to body. Many people improve over time. There are also many symptom specific treatments to ease the pain or suffering experienced by the patient. Antibiotic treatment when the infection is contracted has a high rate of success. Common antibiotics are used to treat the infection that results from the bite, and is prescribed for a couple weeks or until it clears up.

Treatments for the symptoms of Lyme disease can significantly reduce the effects of the disease on the body. For many people, treatment allows them to manage and control symptoms so they are able to lead normal lives. It is also believed that over time, patients generally improve, although some cases may remain active and acute for many years.

And here’s where custom awareness ribbons come in! You know I have to make my pitch about the benefits of making your own awareness ribbon to support a loved one currently suffering from a serious illness, or for yourself. There is something both empowering and quietly, but powerfully, supportive about a custom awareness ribbon with your name or message engraved across it. It allows those who wear it for themselves to own their health and it can inspire them to raise awareness in their community. Wearing custom awareness ribbons for someone you care about can make them feel supported, and loved, and less alone. Awareness pins can be a symbol of power when you feel helpless to change your situation or another’s.

If you would like to order a personalized awareness ribbon for Lyme disease, visit:

https://www.personalizedcause.com/personalized-awareness-ribbons/lime-green-awareness-ribbon-pin-personalized?rq=lyme

Until next time, everyone! Thank you so much for reading and I hope you learned something.

#lymedisease #lymediseaseawarenessmonth #lyme #takeabiteoutoflyme #awareness #awarenessribbon #awarenessribbons #customawarenessribbons #illness #awareness #advocacy #raiseawareness #cancerribbon