The simple truth about chronic pain and/or illness is that it's a lot to deal with. I, for one, have had nine years of practice so I’m kind of a pro at this whole pain thing. Does my pain feel better at all since it started? No, it honesty doesn't.
The reaction I get from people when I say that sort of thing is typically, "but… you don't look or even act like you're in pain." And they’re absolutely right. On the surface, I am practically identical to many other 20-somethings. I’m in college. I enjoy Netflix a little too much for my own good (and productivity). I listen to my music louder than I should, I am a little too obsessed with my favorite band (which, for the record, is Bastille) I stay up too late, I have no idea what I want to do with my life, I’m still not quite sure what the stock market is, and I spend more time on Tumblr than I’d be willing to admit. The list goes on and on.
The difference between me and many other 20-somethings is that I live my life alongside an excruciating and relatively rare chronic pain disorder. I just happen to be a pro at hiding it from the general public.
I could give you a laundry list full of the symptoms and treatments for my disorder, Complex Regional Pain Syndrome, but that wouldn’t matter. I would lose your interest because, frankly, people get tired of chronic illnesses. More often then not, people care more about the destination than the journey.
People generally don’t want to know about all of the late nights ‘painsomnia’ drove you nuts, or about the 14 doctors visits it took to convince your pain management doctor to let you try the new medicine you heard about. People don’t want to be reminded that life isn’t always easy. In life, everyone has pain and we all search for small things to find inspirations to get us through. So when we’re reminded that life isn’t always fair and easy, we tend to run, hide, and cling to the stories with happy endings.
People want success stories.
The general public doesn't understand how one can try a large variety of treatments with little to no success. As we grow up, we are conditioned to know that all illness has an end and when a treatment doesn’t work we get aggravated. When you catch a cold, you go through roughly 47 boxes of tissues, take some cold medicine for a week, and you’re cured. There’s a definitive story line here… the beginning – catch the cold… the middle – take cold medicine… the end – the cold medicine works and you are now cold-free.
Our society has become obsessed with the success stories of people overcoming illness. There’s a high chance that everyone is somehow connected to at least one person who has battled cancer. Thus making cancer stories easily relatable. Even the media has picked up on these stories, producing films such as My Sister’s Keeper or The Fault in our Stars.
Some people might be offended that I am calling these journeys “stories.” However, when you look at the timeline of battling cancer, a lot lines up with the format of stories we were taught from a young age.
With cancer, you learn you're sick and you either get better/go into remission or you die. Though death isn't a success, so to speak, there is still some form of closure. The person is no longer suffering, and some loved ones find comfort in knowing they've moved peacefully to whatever after life they choose to believe in.
So, with cancer, and a lot of terminal illnesses for that matter, there are two blunt "endings" possible. Thus creating a story line with a beginning (diagnosis) a middle (the treatments) and the end (whichever ending comes for each particular patient.)
With something like Complex Regional Pain Syndrome, it's different. CRPS won't kill you. At the same time though, CRPS will never get better except in rare cases. There's seemingly a one in a million chance you'll reach remission. So there's really not much success with this disorder or a lot of other chronic illnesses for that matter.
What we run into in the chronic illness world is a severe lack of empathy. It’s hard to relate to something you don’t understand. As a society, cancer widely affects so many people that we feel it is easy to comprehend and relate. With something as complex as chronic invisible illness, we have a tough time relating because it is somewhat rare for tangible symptoms to be present.
There’s only one true difference between people with cancer and people with invisible illness: Empathy.
Many people with cancer get fundraisers, national coverage on awareness months, and friends and family visiting in the hospital or bringing treats. As someone with chronic pain, I don’t really expect this. People can’t seem to comprehend that I’m 21 and will be living in pain for the rest of my life. I’m having my 20th surgery/procedure in a few weeks and I honestly don’t expect much. Most of my friends have been through this with me before, and aren’t really fazed by the fact that I’m having another surgery. I’m not going to die from my disease and am more than likely not getting much better, so people just aren’t as interested in my story.
No, I’m not terminally ill. No, I’m definitely not trying to make light of terminal illnesses. No, I don’t think that cancer patients necessarily appreciate all of the ‘perks’ mentioned in the previous paragraph.
Of course a lot more goes into battling cancer than what I mentioned above. From what I hear and have witnessed, the treatments for cancer are often extremely painful and wreak havoc on the human body. Even if a person reaches remission, there are numerous symptoms that remain long after the cancer is gone. I understand this and in no way intend to diminish the suffering and pain that goes into each individual’s fight with cancer.
I only wish to bring light on the differences in how society views cancer and chronic illness with this article. I want it to be known that the way society views and treats chronic illness can be damaging for those of us afflicted with it. Quite frankly, it hurts when we see 100 fundraisers for cancer patients circulating the internet whilst there’s only one for our particular disorder.
We don’t want to be a sob story, but we do hope to be recognized. We want people to recognize that we, too, are (mostly figuratively) fighting for our lives. Each day is a struggle to get out of bed and function through immense pain and fatigue, and it’s hard to cope when few people are empathetic towards such difficulties.
So, the next time you see or hear of someone with a chronic invisible illness, give him or her a pat on the back. (Unless that will hurt them… bad idea if it will hurt them.) You don’t know how much effort it took for them to put their pants on that day, let alone leave the house and socialize. They, like everyone else, could use this type of encouragement day in and out.The simple truth about chronic pain and/or illness is that it's a lot to deal with. I, for one, have had nine years of practice so I’m kind of a pro at this whole pain thing. Does my pain feel better at all since it started? No, it honesty doesn't.
The reaction I get from people when I say that sort of thing is typically, "but… you don't look or even act like you're in pain." And they’re absolutely right. On the surface, I am practically identical to many other 20-somethings. I’m in college. I enjoy Netflix a little too much for my own good (and productivity). I listen to my music louder than I should, I am a little too obsessed with my favorite band (which, for the record, is Bastille) I stay up too late, I have no idea what I want to do with my life, I’m still not quite sure what the stock market is, and I spend more time on Tumblr than I’d be willing to admit. The list goes on and on.
The difference between me and many other 20-somethings is that I live my life alongside an excruciating and relatively rare chronic pain disorder. I just happen to be a pro at hiding it from the general public.
I could give you a laundry list full of the symptoms and treatments for my disorder, Complex Regional Pain Syndrome, but that wouldn’t matter. I would lose your interest because, frankly, people get tired of chronic illnesses. More often then not, people care more about the destination than the journey.
People generally don’t want to know about all of the late nights ‘painsomnia’ drove you nuts, or about the 14 doctors visits it took to convince your pain management doctor to let you try the new medicine you heard about. People don’t want to be reminded that life isn’t always easy. In life, everyone has pain and we all search for small things to find inspirations to get us through. So when we’re reminded that life isn’t always fair and easy, we tend to run, hide, and cling to the stories with happy endings.
People want success stories.
The general public doesn't understand how one can try a large variety of treatments with little to no success. As we grow up, we are conditioned to know that all illness has an end and when a treatment doesn’t work we get aggravated. When you catch a cold, you go through roughly 47 boxes of tissues, take some cold medicine for a week, and you’re cured. There’s a definitive story line here… the beginning – catch the cold… the middle – take cold medicine… the end – the cold medicine works and you are now cold-free.
Our society has become obsessed with the success stories of people overcoming illness. There’s a high chance that everyone is somehow connected to at least one person who has battled cancer. Thus making cancer stories easily relatable. Even the media has picked up on these stories, producing films such as My Sister’s Keeper or The Fault in our Stars.
Some people might be offended that I am calling these journeys “stories.” However, when you look at the timeline of battling cancer, a lot lines up with the format of stories we were taught from a young age.
With cancer, you learn you're sick and you either get better/go into remission or you die. Though death isn't a success, so to speak, there is still some form of closure. The person is no longer suffering, and some loved ones find comfort in knowing they've moved peacefully to whatever after life they choose to believe in.
So, with cancer, and a lot of terminal illnesses for that matter, there are two blunt "endings" possible. Thus creating a story line with a beginning (diagnosis) a middle (the treatments) and the end (whichever ending comes for each particular patient.)
With something like Complex Regional Pain Syndrome, it's different. CRPS won't kill you. At the same time though, CRPS will never get better except in rare cases. There's seemingly a one in a million chance you'll reach remission. So there's really not much success with this disorder or a lot of other chronic illnesses for that matter.
What we run into in the chronic illness world is a severe lack of empathy. It’s hard to relate to something you don’t understand. As a society, cancer widely affects so many people that we feel it is easy to comprehend and relate. With something as complex as chronic invisible illness, we have a tough time relating because it is somewhat rare for tangible symptoms to be present.
There’s only one true difference between people with cancer and people with invisible illness; the empathy.
Many people with cancer get fundraisers, national coverage on awareness months, and friends and family visiting in the hospital or bringing treats. As someone with chronic pain, I don’t really expect this. People can’t seem to comprehend that I’m 21 and will be living in pain for the rest of my life. I’m having my 20th surgery/procedure in a few weeks and I honestly don’t expect much. Most of my friends have been through this with me before, and aren’t really fazed by the fact that I’m having another surgery. I’m not going to die from my disease and am more than likely not getting much better, so people just aren’t as interested in my story.
No, I’m not terminally ill. No, I’m definitely not trying to make light of terminal illnesses. No, I don’t think that cancer patients necessarily appreciate all of the ‘perks’ mentioned in the previous paragraph.
Of course a lot more goes into battling cancer than what I mentioned above. From what I hear and have witnessed, the treatments for cancer are often extremely painful and wreak havoc on the human body. Even if a person reaches remission, there are numerous symptoms that remain long after the cancer is gone. I understand this and in no way intend to diminish the suffering and pain that goes into each individual’s fight with cancer.
I only wish to bring light on the differences in how society views cancer and chronic illness with this article. I want it to be known that the way society views and treats chronic illness can be damaging for those of us afflicted with it. Quite frankly, it hurts when we see 100 fundraisers for cancer patients circulating the internet whilst there’s only one for our particular disorder.
We don’t want to be a sob story, but we do hope to be recognized. We want people to recognize that we, too, are (mostly figuratively) fighting for our lives. Each day is a struggle to get out of bed and function through immense pain and fatigue, and it’s hard to cope when few people are empathetic towards such difficulties.
So, the next time you see or hear of someone with a chronic invisible illness, give him or her a pat on the back. (Unless that will hurt them… bad idea if it will hurt them.) You don’t know how much effort it took for them to put their pants on that day, let alone leave the house and socialize. They, like everyone else, could use this type of encouragement day in and out.
