Invisible, Yet Disabled
July 24, 2010 is the Bloggers Unite “Empowering People with Disabilities” event and its goal to raise awareness about empowerment of those with disabilities. One in five Americans is affected by disability and about 10% of Americans have a medical condition which could be considered an invisible disability. 96% of people with chronic medical conditions live with a condition that is invisible. These people do not use canes and other assistive devices and may appear and act perfectly healthy. A quarter of those people have activity limitations, ranging from mild to severe. This is the way in which disability has affected my life.
The public is always willing to help out someone with a visible disability but those of us with invisible disabilities must seek help out on our own and often times, we go without assistance. That does not mean those with invisible disabilities are not protected by the law. The Americans with Disabilities Act covers those with conditions that make persons disabled from certain functions, whether permanent, sporadic, and some cases, temporary.
People with some kinds of invisible disabilities such as chronic pain conditions or sleep disorders maybe accused of faking or imagining their disabilities. Moreover, people can misunderstand and mistake illness or impairment for something it is not. An example is someone who takes the elevator up one floor and is assumed to be lazy simply because that person has a disability that is not obvious or visible.
I struggle with an invisible condition where the physical and emotional struggles and symptoms are invisible to the outside world. Most people do not realize that a disability does not have to be visible and in fact, many diseases including rheumatoid arthritis and fibromyalgia are anything but visible. What they are, however, is sporadic, and do not fit the stereotype of someone sitting in a wheelchair or using a cane because this is how the world around them defines disability. I remember being in my mid-20s visiting medical provider after provider being told that my symptoms were all in my head despite them often times being physically disabling. Apparently, I was not sick or disabled enough to warrant someone’s attention.
The goal of this year’s Bloggers Unite: “Empowering People with Disabilities” Campaign is to raise awareness about our fellow citizens that live with a disability, whether visible or invisible. It only takes a moment to write about disability and add your voice to those writing about this issue. In order to eliminate the barriers that disabled persons face and prejudices that disabled persons must deal with on a daily basis, we need to speak up. Therefore, I ask each of you to write about how disability has affected your life, whether it is you or a loved one, and to step and speak up on July 24.
Please leave a comment letting me know whether you will be participating in the campaign. Look for my post by Saturday afternoon.
When You Can’t See the Pain
Millions of peoples with chronic illnesses suffer alone because their families, friends, coworkers and even doctors don’t believe they are sick because they do not “look” sick. If you suffer from a chronic condition, you have heard it all – if you exercised more, ate healthier, lost weight, or that it is was all in your head.
Suffering from two chronic pain conditions, I wake up every morning like I have not slept. I deal with sharp stabling pains in my joints and muscles all day. It hurts to sit and it hurts to stand. It is exhausting just to go up a flight of stairs, and my brain is often foggy, so often that I can forget the same route I take everyday. I deal with headaches, stomach issues, sore joints, and even sore lymph nodes in my neck and arms. I have been told by doctors that it is all my head or that my blood work is normal. I have taken too many sick days at work and my family and my friends do not realize the extent of my conditions, and they think a vitamin will make me feel better or better shoes will my feet feel better. (If I hear “why are you limping” enough times, they won’t know where to find the bodies!)
Rheumatoid Arthritis Guy says RA is his kryptonite, but my kryptonite is suffering alone. I have learned that I must accept the pain as a part my life, but I have a hard time dealing with the ignorance that comes with having Fibromyalgia and Rheumatoid Arthritis. The ignorance is hard to believe considering the statistics. There are more than 125 million Americans who suffer from at least one chronic pain condition, and 40 million of those people are required to limit daily activities as a result. Only 7 million of those people use a cane or walker, thus having a visible condition. The rest suffer invisibly and alone.
Joint and muscle pain, headaches, and other invisible symptoms that are characteristic of autoimmune disorders, are invisible to the outside world. A hundred years ago, our conditions would have been considered “hysterical” or “mad” conditions. (In other words, we would be wearing straight-jackets.) Needless to say, we have evolved in the last one hundreds years.
The first time that rheumatoid arthritis was described in a doctoral thesis was the year 1800. In 1859, the term “rheumatoid arthritis” was used for the first time. The term, however, was not officially accepted by the American Rheumatism Association (ARA) until 1941. The first official criteria for diagnosis of rheumatoid arthritis did not happen until the late 1950s. So I suppose we can cut the American College of Rheumatology some slack. They have had only fifty years to screw this up figure this out so a cure may take a bit longer (I am optimistic, what else can I do?). Anytime soon would be nice!
Sometimes, I feel sorry for myself, like today when I want my chronic pain to disappear, if just for one day. I want to be able to walk in to a grocery store, and not feel like fainting because I have stood for too long, I want to be able to carry things. I want to be able to sleep at night and to actually feel like I have slept. I want to go without meds for more than a day or two, without quickly feeling like I have been sick all my life. I want to remember what it is I was doing instead of dealing with brain fog. I just to feel better for just one day. I want to be able to sit in one place for more than a half hour without getting up to pain in my feet and knees and not being able to move my legs. I want to feel what “normal” is like. I do not want to be sick. I do not want to be doubted about how sick I am or how much pain I am in. I just want to be healthy and I am not. I just want not to feel sorry for myself for just one day!
More than anything, I just want awareness and to rid the world of ignorance about invisible and chronic pain conditions. I want to throw a pity party if I feel like it (Oh wait! That is exactly what I am doing here! Well, its my blog and I can do what I want to!)
In the words of Mr. Krabs:
Krabs: Three cheers for feeling sorry for ourselves! Hip hip…
All (Sponge, Patrick & Squid): Hooray!
Keep on Blogging for Invisible Illness
Invisible Illness 2009 comes to a close today. It does not mean that if you suffer from an invisible illness or love someone who does you should stop blogging and stop talking about those invisible conditions. It estimated that 25% of the population from some kind of invisible disease. More than half of those people suffer from more than one condition. Only 7% of persons with an invisible condition will use a wheelchair, cane or crutches. The rest suffer in silence. Because of this, we encounter sociocultural indifference and support is limited. Moreover, many invisible diseases even remain controversial even by the standards of the medical community.
There are more than 80 autoimmune diseases that are known to the medical community, and the majority of those invisible conditions. Because of that, there is much indifference when it comes to cultural and social views of such conditions. For example, diabetes, heart disease and cancer are considered invisible diseases, but no one would ever question the limitations of those who suffer from those conditions. Yet, that happens for individuals who suffer from Fibromyalgia, Chronic Fatigue Syndrome, Lupus or Rheumatoid Arthritis.
I know there will not be cures for many of the autoimmune diseases that exist, including RA, not in my lifetime at least. I know that Fibromyalgia, RA, and CFS are a part of my life and I have been for quite some time, and a cure is something that is currently out of reach, but I can lower my expectations. I can deal without a cure and I can live my life. However, I want more understanding for myself and for others who suffer from invisible conditions such as these. I don’t want to always explain to others how these conditions affect me, and how taking a vitamin or two, eating better, or even exercising isn’t going to make these diseases go away. These conditions are on their own schedule, and not mine.
So I ask of my fellow bloggers who suffer from an invisible illness or who have a loved one suffering from an invisible condition to keep blogging and keep making their voices heard. Awareness is the next thing to a cure.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Fibromyalgia and Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: not being able to be as alive as I used to be, especially when it comes to playing with my kids.
5. Most people assume: that my conditions are under control because I hide them so well.
6. The hardest part about mornings are: Trying to pick up the baby to get him ready for daycare.
7. My favorite medical TV show is: Grey’s and ER.
8. A gadget I couldn’t live without is: The wonderful jar opener.
9. The hardest part about nights are: It can be hard to fall asleep because of the pain and the feelings of exhaustion.
10. Each day I take 20 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: I am still thinking about them.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: I wish that my conditions didn’t hinder my success, but they do.
14. People would be surprised to know: I am sick because I hide my conditions so well.
15. The hardest thing to accept about my new reality has been: asking for help, but I am learning one day at a time.
16. Something I never thought I could do with my illness that I did was: talk about it, make it known, and push for awareness.
17. The commercials about my illness: make me crazy.
18. Something I really miss doing since I was diagnosed is: just knowing what the day will bring. I can’t plan like I used to because I never know I will feel.
19. It was really hard to have to give up: working out daily and a lot of my favorite foods.
20. A new hobby I have taken up since my diagnosis is: mediating, praying and blogging.
21. If I could have one day of feeling normal again I would: I would run, dance and sing and do all the things I can no longer physically do.
22. My illness has taught me: patience, acceptance and strength.
23. Want to know a secret? One thing people say that gets under my skin is: people who spend money like crazy or don’t take of their bodies.
24. But I love it when people: give to charity and help others.
25. My favorite motto, scripture, quote that gets me through tough times is: Admiration is the daughter of ignorance. ~Benjamin Franklin. I have learned not to admire and to enjoy what life has already given me.
26. When someone is diagnosed I’d like to tell them: It is all about attitude.
27. Something that has surprised me about living with an illness is: how strong I am and how I patient I have become.
28. The nicest thing someone did for me when I wasn’t feeling well was: Told me I was beautiful, smart and funny.
29. I’m involved with Invisible Illness Week because: I want there to someday be cures for my conditions so that my children never have to suffer as I have.
30. The fact that you read this list makes me feel: Happy, that someone else wants to know now important awareness is.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at
http://www.invisibleillness.com/
Living With Invisible Illnesses
Not all disabilities are visible: rheumatoid arthritis, fibromyalgia, lupus, celiac disease, and many more. The stereotype that someone should be sitting in a wheel chair or using a cane in order to be disabled still exists in this day and age. Just because information is available about the multitude of invisible illnesses does not mean that those who do not suffer will truly understand. Sufferers are often met with impoliteness, disbelief and hostility. Many are even told that they are down right lying. For those of us who suffer from the many invisible diseases, especially those they were difficult to diagnosis, we understand all to well the lack of awareness is to blame. I remember years ago sitting in a doctor’s office being told that perhaps anti-depressants would make my symptoms go away. I was not depressed nor was I mentally ill; I was suffering from the daily affects of fibromyalgia and rheumatoid arthritis in my mid to late twenties and I was not officially diagnosed until I was 32 years old.
Why does society struggle to understand that such invisible conditions exist? Moreover, how does that play a role in the treatment of people who suffer from invisible conditions where there is no cure? Many questions to ponder, but when you suffer from two invisible conditions, you question yourself, your treatments, your own attitudes and the attitudes of others so many times during the day. It is estimated that half of the American population suffers from some kind of chronic condition and that 96% of those people suffer from an invisible condition, and still, we live in an age of ignorance.
One thing I have learned from my own experiences is that looking at people beyond appearance is tricky. If someday does not look sick, how can they possibly be sick? As a thriving society, we tend to ignore illness because the days of contemplation are gone; every one is too busy making a living to stop and wonder about his or her own health let along the health of others. Aside them that, if you convince yourself someone is lying, then you can see past that person’s disability. You wouldn’t say the same for the person’s who disability is visible.
Let us also take into consideration that most invisible conditions are not only invisible but change on a day-to-day, even an hour-to-hour, basis. Someone who needs assistance may not be visible if their disability is invisible. A person in a wheelchair obviously needs reasonable accommodation, but a person who suffers from a chronic pain condition does not need such accommodation and does not know in advance if he or she will. Symptoms can arise with RA and fibromyalgia overnight. They can last for days, weeks and even months, sometimes for longer periods, other times for shorter.
People who suffer from invisible conditions have a multitude of symptoms. For example, symptoms of RA include (and this in addition to joint pain): fatigue, lack of energy or appetite, low grade fever, muscle ache and joint aches, stiffness, nausea and flu-like symptoms. Moreover, inflammation can affect organs and other areas of the body. Inflammation can also be founds in the eyes and mouth causing dryness. Other inflammation can be in the lung lining which leads to chest pain when breathing, shortness of breath and coughing. Chest pain can also be a result of inflammation of the pericardium (tissue around the heart); chest pain intensities and changes when lying down or leaning forward. Moreover, rheumatoid disease also can reduce the number of blood cells causing anemia.
Source: Medicine.Net.
Symptoms of fibromyalgia include: Chronic muscle pain, muscle spasms or tightness, and leg cramps, Moderate or severe fatigue and decreased energy, Insomnia or waking up feeling just as tired as when you went to sleep, Stiffness upon waking or after staying in one position for too long, Difficulty remembering, concentrating, and performing simple mental tasks, Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome), Tension or migraine headaches, Jaw and facial tenderness, Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold, Feeling anxious or depressed, Numbness or tingling in the face, arms, hands, legs, or feet, Increase in urinary urgency or frequency (irritable bladder), Reduced tolerance for exercise and muscle pain after exercise, A feeling of swelling (without actual swelling) in the hands and feet, Painful menstrual periods, and dizziness. Moreover, fibromyalgia symptoms intensify depending on the time of the day. They may also get worse with fatigue, tension, weather changes (cold weather aggravates symptoms), hormonal fluctuations (such as just before your period or during menopause), and emotional factors like stress.
Source: MedMD.
Last, part of having an invisible disease means it is really invisible. People with clear disabilities may have a wheel chair or a cane, but being almost 34, and having to sit down because it is impossible to stand too long can get you a lot of cold stares. I have learned to accept the fact that these conditions will not always allow me to give the seat to someone else and other times, I just grin and bear it. After all, I am invisible.
All I can do is blog and make my voice heard, and I am not the only one blogging to raise awareness. Tomorrow concludes Invisible Illness Week, but I will continue blogging, as will others who suffer from invisible conditions.
My RA Glasses
This is what RA sufferers are accustomed to a daily basis, along with years of misdiagnosis and believing and being told it is all in their head. Once they are diagnosed, they feel some kind of relief in knowing, but the lack of understanding of family and friends can be a tough burden to bear. It is like wearing an “A” on your chest as Hester did in the Scarlet Letter. There is so much people do not understand about RA. It is not just “arthritis” pain, stiffness and swelling.
There are so many more symptoms and conditions related to RA, that even doctors are just starting to learn about, so no fault lies in the lack of understanding. However, it is estimated that 2.1 million people in the United States alone who suffer from rheumatoid arthritis. RA symptoms vary from one individual to another, but every sufferer faces the same predicament when it comes to those around them. The same misconceptions and lack of understanding exists from family, friends and the outside world.
While the ignorance faced is no one’s fault, awareness is so important. This is my world through my RA glasses and all I can do is share it. I hope that I can spread some kind of understanding to this disease, and while I cannot hand my RA glasses so others can understand, I can talk and blog about RA every opportunity I get, and I hope that I reach others who have family members that suffer and allow them to have an understanding that I strive for in my own family.
