Imagine for just a moment that you are once again a child. Your life stretched out in front of you. Your world is full of dreams of what is yet to come. The sky is the limit. And, although it has its shinning moments of tribulation and social awkwardness, life is generally good. There is nothing you cannot do; all that you really have to do is decide what you want to become. Ah, life is grand.
Now imagine for a moment that you are told that you have a rare invisible illness. You are no longer like every other child playmate or relative of yours. You are different and you have no idea why.
Your world now revolves around doctor appointments, medical exams and tests. You are told you are no longer able to do the physical activities you once enjoyed; like running or playing. You are in constant pain that no one can see the cause of. People tell you that you whine a lot and to suck it up. You have no energy from the pain; you cannot figure out why all you want to do is sleep all the time. People just call you lazy. You are given medicines and told to take them. You don’t understand why, you just do as they say. You can’t figure out why it’s so hard now to remember the simple things. You think you are going insane. And often times, even worse, think you are stupid.
No, you don’t have some bizarre illness that no ones heard of. You have one that everyone has heard of, and they think they know everything about it, and yet, know very little. You have a rheumatic illness.
Most people don’t realize that billions of children world-wide have this disease. They do not realize that it doesn’t just cause “achy bones” that a few Tylenol can help ease. They don’t realize that there are over 115 different types of rheumatic illnesses; all of which affect the body in various ways, and not just the bones. They can also affect organs, muscles, skin, and other various body parts. Thankfully, some will out-grow their rheumatic illness; as in the case of Jr. Rheumatoid Arthritis. Many more, however, will not, and will suffer on through teenage years and into adulthood; where they will continue to be misunderstood.
It is difficult for anyone who has a chronic illness, and doubly so to have it as a child or young adult. It makes it even harder when you are constantly bombarded by people who think they know the magic cure-all pill and people who think you are a liar because “you look just fine” to them.
I know what this is like because I was diagnosed at age 9 with Jr. Rheumatoid Arthritis in Seattle. I was re-diagnosed by the Arthritis Society in Vancouver, BC with Mixed Connective Tissue Disease; which is Rheumatoid Arthritis, Polymyositis, Sjogrens Syndrome, Vasculitis, Raynauds Syndrome & SLE (Lupus) at age 14. I was one of 12 children in Canada with this disease; and only one of 50 in North America.
I went through the barrage of X-Rays, CT Scans, EEGs, EKG’s, vast amounts of blood work and more to get this figured out. I had to deal with Rheumatologists, Physiotherapists, Occupational Therapists, Ophthalmologists and more specialists than I can shake a stick at. That was before I even turned 15.
I had to deal with teachers who couldn’t understand why I had to take time off school to constantly be at a doctor appointment or due to bed rest; or why I couldn’t do things like P.E. I had to deal with peers who couldn’t comprehend what I had to deal with. It made for a fairly lonely existence in school.
And if I ever thought that I had it bad, my mother had it worse. She knew when I was 18 months old that I had arthritis. She talked to my pediatrician about it, to which he replied only old people get it, she was just over reacting. When I started getting calcium deposits on my hands and toes; she again voiced her concerns. Again, no one listened. At age 9, I was living with my father and step-mother in Seattle and my stepmother was an Orthopedics RN. She realized after talking to my mother that she was right, something wasn’t quite right. She realized watching me with my cousins that when I sat on the floor, I couldn’t get back up on my own. I had great difficulties doing so. In fact, I looked like one of her senior patients trying to get up. So she started pushing the doctors to run more tests. I was one of the lucky few. Many go undiagnosed by the medical professionals and ignored by their parents as well. Pain is chalked up to “growing pains”, the exhaustion is due to being “lazy” or lack of proper sleeping habits. It’s often not until they are young adults that they find out what they have.
As adults, they will likely face much of what I have. Those who cannot afford a post-secondary education will likely end up doing entry level work and end up doing more damage to their joints. They will deal with bosses who have little comprehension (and often really don’t care) about why they have limitations or have to take time off work. They will deal with the brain fog caused by flare ups and also by some of the medications. They will deal with a vicious cycle of over-working their body to the point they have to take time off, causing them to stress out about finances, which causes their health to become increasingly worse. They will deal with all the psychological issues that accompany having an invisible illness; as well as be misunderstood co-workers and friends who don’t truly understand what they are going through; and often call them lazy as well. After all, it can’t kill you right? Wrong.
Then as a last resort, when their bodies finally hit rock bottom, after numerous trips to the hospital and doctors offices; they will try to apply to some government agency for help.
After all, isn’t that what they are there for? There they will deal with professionals who also have no idea what their illness is about, and once again being stigmatized as “looking fine” and just “being lazy”. Some will even be called liars. Some will not be able to work again. Some will just need aid being retrained to do a more appropriate job and then go on to lead independent lives again.
All of them will need understanding along the way from diagnosis right on through til the day they die. They will need medical & dental professionals, employers, teachers, and even government workers to understand what a rheumatic disease is and how it can affect a person. What their limitations truly are; and what their needs truly are from each of them.
Medical professionals need to be able to spot the zebra in the herd of horses and quickly diagnose children with rheumatic diseases and stop chalking it up to always being something else because kids can’t get it. Dental professionals need to understand some rheumatic diseases cause mouth decay and abscesses and it’s not due to lack of brushing. But there are ways to prevent some of it. Teachers need to understand the limitations physically and even mentally that children (and yes even young adults returning to post secondary) have; due to medications as “brain fog” caused by flare ups. Employers need to understand that there are limitations and work with their disabled employees. Many want to work, they just need the opportunity; along with the proper work place. Government workers need to stop judging them as lazy because they aren’t on crutches or need a guide dog. Just because things look fine on the exterior doesn’t mean there’s not trouble brewing under the surface that you cannot see.
And last but not least, YOU, the friends and family; the neighbors and co-workers of those with a rheumatic illness need to educate yourself as well; which is why I am writing this to begin with.
They need your understanding and support. They don’t need to be mollycoddled; nor do they want pity. Most will over-compensate and overdo things just to be “normal”. They need you to know that some days, yes they will feel spry and fine; and some days they will not have the energy to lift their heads off the pillow. They need you to understand some days they will feel blue as the sea and others angry at the world, and sometimes just fine. They need you to understand some areas they cannot live in due to climate – even if it breaks their hearts being far from home. They need you to not think that it isn’t a serious illness that can put them into the hospital, that it does affect organs and other body parts than just their bones. They need you to be supportive. And they need you to help educate others, so that eventually, there will be no misconceptions. They need you to help raise awareness to that everyone knows about this disease as much as they do about other diseases like cancer or diabetes. They need you to help fight for research to be done on this illness that has been around since the dawn of time, so that one day; there will be a cure; and maybe; just maybe, the next generation of children won’t have to go through what we did.
Now imagine for a moment that you are told that you have a rare invisible illness. You are no longer like every other child playmate or relative of yours. You are different and you have no idea why.
Your world now revolves around doctor appointments, medical exams and tests. You are told you are no longer able to do the physical activities you once enjoyed; like running or playing. You are in constant pain that no one can see the cause of. People tell you that you whine a lot and to suck it up. You have no energy from the pain; you cannot figure out why all you want to do is sleep all the time. People just call you lazy. You are given medicines and told to take them. You don’t understand why, you just do as they say. You can’t figure out why it’s so hard now to remember the simple things. You think you are going insane. And often times, even worse, think you are stupid.
No, you don’t have some bizarre illness that no ones heard of. You have one that everyone has heard of, and they think they know everything about it, and yet, know very little. You have a rheumatic illness.
Most people don’t realize that billions of children world-wide have this disease. They do not realize that it doesn’t just cause “achy bones” that a few Tylenol can help ease. They don’t realize that there are over 115 different types of rheumatic illnesses; all of which affect the body in various ways, and not just the bones. They can also affect organs, muscles, skin, and other various body parts. Thankfully, some will out-grow their rheumatic illness; as in the case of Jr. Rheumatoid Arthritis. Many more, however, will not, and will suffer on through teenage years and into adulthood; where they will continue to be misunderstood.
It is difficult for anyone who has a chronic illness, and doubly so to have it as a child or young adult. It makes it even harder when you are constantly bombarded by people who think they know the magic cure-all pill and people who think you are a liar because “you look just fine” to them.
I know what this is like because I was diagnosed at age 9 with Jr. Rheumatoid Arthritis in Seattle. I was re-diagnosed by the Arthritis Society in Vancouver, BC with Mixed Connective Tissue Disease; which is Rheumatoid Arthritis, Polymyositis, Sjogrens Syndrome, Vasculitis, Raynauds Syndrome & SLE (Lupus) at age 14. I was one of 12 children in Canada with this disease; and only one of 50 in North America.
I went through the barrage of X-Rays, CT Scans, EEGs, EKG’s, vast amounts of blood work and more to get this figured out. I had to deal with Rheumatologists, Physiotherapists, Occupational Therapists, Ophthalmologists and more specialists than I can shake a stick at. That was before I even turned 15.
I had to deal with teachers who couldn’t understand why I had to take time off school to constantly be at a doctor appointment or due to bed rest; or why I couldn’t do things like P.E. I had to deal with peers who couldn’t comprehend what I had to deal with. It made for a fairly lonely existence in school.
And if I ever thought that I had it bad, my mother had it worse. She knew when I was 18 months old that I had arthritis. She talked to my pediatrician about it, to which he replied only old people get it, she was just over reacting. When I started getting calcium deposits on my hands and toes; she again voiced her concerns. Again, no one listened. At age 9, I was living with my father and step-mother in Seattle and my stepmother was an Orthopedics RN. She realized after talking to my mother that she was right, something wasn’t quite right. She realized watching me with my cousins that when I sat on the floor, I couldn’t get back up on my own. I had great difficulties doing so. In fact, I looked like one of her senior patients trying to get up. So she started pushing the doctors to run more tests. I was one of the lucky few. Many go undiagnosed by the medical professionals and ignored by their parents as well. Pain is chalked up to “growing pains”, the exhaustion is due to being “lazy” or lack of proper sleeping habits. It’s often not until they are young adults that they find out what they have.
As adults, they will likely face much of what I have. Those who cannot afford a post-secondary education will likely end up doing entry level work and end up doing more damage to their joints. They will deal with bosses who have little comprehension (and often really don’t care) about why they have limitations or have to take time off work. They will deal with the brain fog caused by flare ups and also by some of the medications. They will deal with a vicious cycle of over-working their body to the point they have to take time off, causing them to stress out about finances, which causes their health to become increasingly worse. They will deal with all the psychological issues that accompany having an invisible illness; as well as be misunderstood co-workers and friends who don’t truly understand what they are going through; and often call them lazy as well. After all, it can’t kill you right? Wrong.
Then as a last resort, when their bodies finally hit rock bottom, after numerous trips to the hospital and doctors offices; they will try to apply to some government agency for help.
After all, isn’t that what they are there for? There they will deal with professionals who also have no idea what their illness is about, and once again being stigmatized as “looking fine” and just “being lazy”. Some will even be called liars. Some will not be able to work again. Some will just need aid being retrained to do a more appropriate job and then go on to lead independent lives again.
All of them will need understanding along the way from diagnosis right on through til the day they die. They will need medical & dental professionals, employers, teachers, and even government workers to understand what a rheumatic disease is and how it can affect a person. What their limitations truly are; and what their needs truly are from each of them.
Medical professionals need to be able to spot the zebra in the herd of horses and quickly diagnose children with rheumatic diseases and stop chalking it up to always being something else because kids can’t get it. Dental professionals need to understand some rheumatic diseases cause mouth decay and abscesses and it’s not due to lack of brushing. But there are ways to prevent some of it. Teachers need to understand the limitations physically and even mentally that children (and yes even young adults returning to post secondary) have; due to medications as “brain fog” caused by flare ups. Employers need to understand that there are limitations and work with their disabled employees. Many want to work, they just need the opportunity; along with the proper work place. Government workers need to stop judging them as lazy because they aren’t on crutches or need a guide dog. Just because things look fine on the exterior doesn’t mean there’s not trouble brewing under the surface that you cannot see.
And last but not least, YOU, the friends and family; the neighbors and co-workers of those with a rheumatic illness need to educate yourself as well; which is why I am writing this to begin with.
They need your understanding and support. They don’t need to be mollycoddled; nor do they want pity. Most will over-compensate and overdo things just to be “normal”. They need you to know that some days, yes they will feel spry and fine; and some days they will not have the energy to lift their heads off the pillow. They need you to understand some days they will feel blue as the sea and others angry at the world, and sometimes just fine. They need you to understand some areas they cannot live in due to climate – even if it breaks their hearts being far from home. They need you to not think that it isn’t a serious illness that can put them into the hospital, that it does affect organs and other body parts than just their bones. They need you to be supportive. And they need you to help educate others, so that eventually, there will be no misconceptions. They need you to help raise awareness to that everyone knows about this disease as much as they do about other diseases like cancer or diabetes. They need you to help fight for research to be done on this illness that has been around since the dawn of time, so that one day; there will be a cure; and maybe; just maybe, the next generation of children won’t have to go through what we did.
My son was just diagnosed with JDRA, I am sending this to family to read
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