I've been reading Grace Stuart's Private World of Pain --- a 1953 London publication I borrowed through an inter-library loan.
My interest in this rare publication was piqued not only by Stuart's experience with rheumatoid arthritis, but because it was written during the years my mother was living with RA without the benefits of the treatments available to me today.
In the introduction, Stuart divides her life with RA with the two phrases: "before cortisone" and "after cortisone," and credits the eventual availability of cortisone to her ability to "record from a subjective point of view such changes both physical and psychological as an addition of hormone (cortisone) might produce in me."
Though I long to be able to stop my need for prednisone, I've remained on various dosages since my diagnosis. I was impressed with the insight in Stuart's prophetic comment that cortisone would be a "signpost and not a destination" in the treatment of RA.
Grace was fifty-two and had endured the pain and suffering of RA for over thirty years before the discovery of cortisone, and in chapter 1, she describes her anticipation and hope of receiving this drug that was only available in America at the time and not to her in England.
It was in 1948 that the chemist Edward Kendall, a Mayo Clinic researcher, discovered the anti-rheumatic properties of cortisone, and on September 21, 1948, the compound he labeled E (eventually renamed cortisone) became the first glucocorticoid to be administered to a patient with rheumatoid arthritis. One year later, cortisone was commercially produced in America by Merck & Company.
It was in 1948 that the chemist Edward Kendall, a Mayo Clinic researcher, discovered the anti-rheumatic properties of cortisone, and on September 21, 1948, the compound he labeled E (eventually renamed cortisone) became the first glucocorticoid to be administered to a patient with rheumatoid arthritis. One year later, cortisone was commercially produced in America by Merck & Company.
In the waiting for cortisone to reach her in England, Grace held onto hope for happier days.
"For our disease has meant not only damaged joints and tissues. It has meant that our whole bodies were sick and that depression fogged our minds."
She also discussed the emotional pain of the unkind attention she'd received from others, and praises for those who had not been unkind in calling attention to her disabilities.
"It may possibly give them pleasure to know that they brought healing to the wounds they never caused."
I know all too well what she meant. I seldom talk (or write) about living with autoimmune diseases anymore because I dread the "unkind attention" --- though I don't think most people mean to be unkind, they're simply uninformed.
Thirty-five years ago I had emergency surgery for a perforated colon. Eventually I was diagnosed with crohns disease --- an autoimmune disease like RA. In fact, some of the same medications I take for RA today were prescribed for me years ago during crohns flares. I've since learned that it's common for those of us with one autoimmune disease to eventually be diagnosed with another one. When I was referred to a lung specialist early in my RA diagnosis, he wasn't sure if the damage to my lungs was from RA or crohns. It could be either one.
Long after I was diagnosed with crohns, unkind or disparaging comments were discouraging and confusing. Suggestions that I should have more faith, adopt a vegan diet (or any other diet along the wide spectrum of choices) and consider Doctor So-and-so who had discovered a miracle cure made me feel like a)I was somehow at fault for having this disease and b)I couldn't trust the medical community. I thought I'd learned during those years to be less thin-skinned, but in reality, crohns had gone into remission. Even when flares returned, they were short-lived and months apart, so I rarely brought them to anyone's attention.
It wasn't until I was diagnosed with RA that I once again faced wading through (and past) the suggestions from so many others for what I should do. This time I was older and wiser and I had my mother's experience with RA as reinforcement.
My mother was diagnosed with RA when she was in her 20's. One of my sons has crohns and Grave's disease. There's a good chance that genes are responsible, at least in part, for autoimmune diseases. The diseases often run in families. I watched my mother search for a cure by following as many suggestions for holistic and medical treatments that she could afford and none of them produced any long-lasting or positive results.
All that to say that I, too, am grateful for those who "bring healing to the wounds they never cause." They bring healing by not suggesting a treatment or cure they heard or read about. I know that most people offer these suggestions because they care about us and want to see us well, so I've learned to say, "Thank you for sharing that with me." I don't know anyone with RA or any other autoimmune disease who hasn't been proactive. They have done the research and armed themselves with information on possible treatment options from a variety of resources --- from the natural and holistic to the pharmaceutical and surgical.
Those who bring healing do so by educating themselves in the same way. They look beyond their own bias (and we all have one) about health, wellness, and the medical and pharmaceutical community, and they consider that what might be the right decision for them, might not be good for others. They learn about autoimmune diseases and listen to the stories of those who live with the disease. They learn that autoimmune diseases can be invisible to those without it --- that we often appear to be much healthier than we really are --- and that many of us with a handicap placard are young and don't need a wheelchair (or maybe we do), but the ability and/or strength to navigate our environment can be just as challenging and difficult. There are many days when measuring our steps is important, and the added steps saved by parking in a handicap spot in a full parking lot might make the difference in whether we shop for groceries or not.
Those who bring healing listen to us when we could use a compassionate friend who understands that sometimes we just need to vent. We aren't looking for pity or sympathy. Neither are we wanting someone to fix us or do something --- though we'd likely, gladly welcome a gentle hug, some dark chocolate, and the promise to remember us in prayer.
Many of us who have lived with autoimmune diseases for a while have adjusted. We've learned how to manage pain on most days and to cope with an array of challenges. While recognizing our limitations, we enjoy a full, satisfying and grateful life. We know that there are many other diseases that are much worse, Autoimmune disease is not our identity, but it's an important part of our story, and sharing our stories --- our good days and our bad days --- is one way we can educate the public, as well as encourage others to know that we are not alone. It's a way of lettings those with RA or other autoimmune diseases know they're understood.
Several years ago I wrote about the importance of hearing the stories of those who live with similar struggles because...
Thirty-five years ago I had emergency surgery for a perforated colon. Eventually I was diagnosed with crohns disease --- an autoimmune disease like RA. In fact, some of the same medications I take for RA today were prescribed for me years ago during crohns flares. I've since learned that it's common for those of us with one autoimmune disease to eventually be diagnosed with another one. When I was referred to a lung specialist early in my RA diagnosis, he wasn't sure if the damage to my lungs was from RA or crohns. It could be either one.
Long after I was diagnosed with crohns, unkind or disparaging comments were discouraging and confusing. Suggestions that I should have more faith, adopt a vegan diet (or any other diet along the wide spectrum of choices) and consider Doctor So-and-so who had discovered a miracle cure made me feel like a)I was somehow at fault for having this disease and b)I couldn't trust the medical community. I thought I'd learned during those years to be less thin-skinned, but in reality, crohns had gone into remission. Even when flares returned, they were short-lived and months apart, so I rarely brought them to anyone's attention.
It wasn't until I was diagnosed with RA that I once again faced wading through (and past) the suggestions from so many others for what I should do. This time I was older and wiser and I had my mother's experience with RA as reinforcement.
My mother was diagnosed with RA when she was in her 20's. One of my sons has crohns and Grave's disease. There's a good chance that genes are responsible, at least in part, for autoimmune diseases. The diseases often run in families. I watched my mother search for a cure by following as many suggestions for holistic and medical treatments that she could afford and none of them produced any long-lasting or positive results.
All that to say that I, too, am grateful for those who "bring healing to the wounds they never cause." They bring healing by not suggesting a treatment or cure they heard or read about. I know that most people offer these suggestions because they care about us and want to see us well, so I've learned to say, "Thank you for sharing that with me." I don't know anyone with RA or any other autoimmune disease who hasn't been proactive. They have done the research and armed themselves with information on possible treatment options from a variety of resources --- from the natural and holistic to the pharmaceutical and surgical.
Those who bring healing do so by educating themselves in the same way. They look beyond their own bias (and we all have one) about health, wellness, and the medical and pharmaceutical community, and they consider that what might be the right decision for them, might not be good for others. They learn about autoimmune diseases and listen to the stories of those who live with the disease. They learn that autoimmune diseases can be invisible to those without it --- that we often appear to be much healthier than we really are --- and that many of us with a handicap placard are young and don't need a wheelchair (or maybe we do), but the ability and/or strength to navigate our environment can be just as challenging and difficult. There are many days when measuring our steps is important, and the added steps saved by parking in a handicap spot in a full parking lot might make the difference in whether we shop for groceries or not.
Those who bring healing listen to us when we could use a compassionate friend who understands that sometimes we just need to vent. We aren't looking for pity or sympathy. Neither are we wanting someone to fix us or do something --- though we'd likely, gladly welcome a gentle hug, some dark chocolate, and the promise to remember us in prayer.
Many of us who have lived with autoimmune diseases for a while have adjusted. We've learned how to manage pain on most days and to cope with an array of challenges. While recognizing our limitations, we enjoy a full, satisfying and grateful life. We know that there are many other diseases that are much worse, Autoimmune disease is not our identity, but it's an important part of our story, and sharing our stories --- our good days and our bad days --- is one way we can educate the public, as well as encourage others to know that we are not alone. It's a way of lettings those with RA or other autoimmune diseases know they're understood.
Several years ago I wrote about the importance of hearing the stories of those who live with similar struggles because...
"For no man can tell what in that combat attends us but he that hath been in the battle himself" John Bunyan, Pilgrim's ProgressThere will be stories of good days and bad days --- stories of "the combat that attends us." They are not a cry for pity or sympathy, but an opportunity to educate those who love and live with us, those whose battles are not autoimmune diseases, and more importantly, to encourage those among us who remain "in the battle."
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