Rheumatic diseases don’t play by the rules. The conditions can be debilitating, often chronic, and frequently penetrate the very foundation of patients’ lives.
Clinicians must do much more than just follow the textbooks. On a physical level, the conditions can present during clinical examinations in individualized patterns, often in atypical forms and with seemingly minute subtleties. Further, effective treatment is not just about addressing a medical checklist of patient’s physical symptoms. These diseases can dismantle patients’ days and nights in profound ways no textbook can fully cover.
That’s why HSS has launched Rheum to Heal: Stories of Health & Humanity, a new, online narrative journal by and for people living with rheumatic conditions and the medical professional who care for them. Rheum to Heal will use the power of words and images, combined with the nurturing balm of community, to transform all who share them. The frequently common emotional impact of chronic rheumatic diseases, once creatively expressed, has the ability to unite and heal.
HSS will publish and distribute Rheum to Heal through free online subscription. Each issue will feature poetry, prose, artwork, and photography on, or related to, themes of health, healing, challenges, feelings, challenges of navigating illness, mind, body, and/or self-transformation. All forms of creative expression using words and images are welcome.
Rheum to Heal will accept pieces from patients with arthritis, autoimmune diseases, pain disorders affecting joints, and osteoporosis, as well as doctors, clinicians, and health professionals – practicing or retired – in the field of rheumatology. Contributions will also come from physicians and other medical professionals involved with helping the lives of people who have rheumatic conditions.
Relevant book reviews, commentaries and opinion pieces, about, or related to, ethics, public health/health policy or careers in rheumatology are also welcome.
Hospital for Special Surgery is an institution that values individuality and the wholeness of an individual. Everyone, the faculty member, the trainee, and most importantly the patient, is a person with experiences, objectives and ambitions – not just a set of numbers, whether those numbers are scores, rankings or lab results.
We acknowledge that physicians do not have a monopoly on wisdom and hope to decrease the psychological distance between physician and patient. Health professionals are encouraged to accept invitations into the intimate chambers of their patients’ lives and in so doing, provide medical care based on open communication, mutual respect and unreserved empathy.
In sponsoring Rheum to Heal, HSS also hopes to build a sense of community among people with similar health struggles and reduce the sense of isolation that often accompanies chronic illness. We know that our patients’ voices are often lost and that those voices are profound. We want to create a platform to showcase and share the healing power of their voices and stories.
Hearing a patient’s experience as a narrative can be critical when doctors are making diagnoses and understanding the impact of disease on individual patients. Details of life are just as important as measured tests when managing a patient’s healthcare in rheumatic conditions. Qualitative studies in musculoskeletal research have examined how diaries and stories have the potential to affect long-term changes in patient health and well being.
Being highly accessible, Rheum to Heal, will be able to bring attention to all rheumatic diseases, some of which are rare and understudied. We can emphasize humanistic, patient-centered approaches in the field of rheumatology as a whole.
HSS Attending Rheumatologist Michael J. Lockshin, MD, co-wrote a memoir with a patient, Alida Brill, about negotiating life with chronic illness, called Dancing at the River’s Edge. A quote from that work illuminates how patient and caregiver can be enriched by shared experience.
"We think of ourselves as collaborating cartographers, each charting a world
we both know, but using different mapmaker’s tools. We observe, take note,
discuss, and learn from each other. Our conversation is often true dialogue –
interaction, translation, comprehension, persuasion, compromise – those
human qualities necessary to the success of any intense and intimate
– Michael J. Lockshin, MD
“Dancing at the River’s Edge”
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Reviewed and Updated: 10/31/2013