Out of Joint: A Private and Public Story of Arthritis

American Lives

by Mary Felstiner

She begins, in the morning, by casing her Can her ankles take the stairs? Will her fingers open a jar? Peel an orange? But it was not always this way for Mary Felstiner, who went to bed one night an active professional and healthy young mother, and woke the next morning literally out of joint. With wrists and elbows no longer working right, she’d discovered one of the first signs of rheumatoid arthritis, the most virulent form of a common disease. Out of Joint is her account of living through arthritis, a distinction she shares with seventy million Americans.

 

While arthritis pain affects one out of three Americans, this book is the first to tell the personal story of the nation’s most common yet neglected disease. Part memoir, part medical and social history, Out of Joint folds the author’s private experience into far-reaching investigations of a socially hidden ailment and of any chronic condition—how to handle love, work, sexuality, fatigue, betrayal, pain, time, mortality, rights, myths, and memory. Moving from the 1940s to the present, this story of one life with arthritis exposes little-known medical research and provocative social alarming controversies over arthritis miracle drugs, intense demands concerning disability, and the surprising and disproportionate number of women affected by chronic illness. From this prize-winning historian comes a call for healing through history, a moving meditation on the way chronic conditions can be treated by enlisting the past.

Genres: Nonfiction, Disability, Memoir, Medical

222 pages, Hardcover

First published October 1, 2005

Reviews

[Susan · Rating 4 out of 5]

4 stars. I almost loved this book. Having recently been battling some yet to be definitively diagnosed type of arthritis myself, I've been hunting down narrative books on the topic and there are tragically few. So far I've found 3 memoirs (this is the second I've read) and just one fiction book, an out of print YA novel that I can't seem to track down a copy of for under 45 bucks. So more than simply liking this book, I'm really grateful for it, as it is the most comprehensive I've read written by someone who tells a story about living with arthritis as much as wanting to teach readers about the disease.

And I did learn a lot- about the history of the disease in art and literature, its continous lack of being taken seriously as a disabling chronic disease and the medical communities' apparent bafflement in effective treatments and cures over the last four decades.

I appreciated the author's candidness about her own story and search for answers as an academic, as a patient, and as a mother and wife. I connected to her frustration and exhaustion. And I adored her for pointing out the feminist perspective, that diseases that primarily affect women, almost all autoimmune disorders including arthritis, are under researched and underfunded and often taken less seriously than those that affect the sexes equally or those that afflict primarily men. I loved that anger. I relate to that fury.

What I was most grateful for in reading this book (not an easy or fast read in any way- the author's background in academia is obvious in her style of prose, but though it may turn off some readers, I enjoyed her advanced verbiage), though, was she found and wrote about what I was looking for the past few months FOR me- poetry, quotes from literature and history, art-- that depicts arthritis. Because for as common a disease as this is, it isn't found very easily in the canon, in our cultural lexicon. And when a bookish person wants to learn, and wants to dive into art that describes what he or she is experiencing, art and literature is often where we turn first. I love that she wrote this for us, for herself, for the myriad women and men who battle shitty fatigue and furious joints, and who need to find ourselves in our bookish world to feel better.

[April · Rating 5 out of 5]

Read 2x. Once BEFORE I was diagnosed with Rheumatoid Arthritis, & once AFTER I was diagnosed with Rheumatoid Arthritis. A personal memoir, interspersed with historic context, family life, disability rights, current events, poetry, & healing.

[Kulthoum كلثوم · Rating 5 out of 5]

Out of joint by Mary Felstines
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Shame leaves me formless and unarmed, feeling in my bones that I'll be left behind
 ما قد يكون أسوء شعور يصاب به المريض.. إنه الخجل من نفسه ..
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سيرة ذاتية لمصابة بالتهاب المفاصل الرثياني(الروماتويد) من فترة السيتينيات .من المثيرة معرفة مدى تطور اﻷدوية المعطاة للمصابين،بداية من دواء اﻹسبرين اﻷساسي بجانب مضادات الملاريا  !! أضيف إليه لاحقا إبر الذهب حتى فترة السبعينيات و الميثوتريكسايت في أواخر الثمانينيات ثم استعمال الأدوية السترويدية في بداية التسعينيات ،و كبقية المصابين تحاول فهم ماهيته و أسباب الإصابة و علاقته بمرض الإيدز و الحمل،تبحث في حقوق مرضى الروماتويد في تحسين جودة معيشتهم بجانب حقوقهم في دعمهم للعمل،تنتقد نظرة المجتمع المدني للمرأة العاملة و المربية يتبعهم المجمع الطبي في تحيزه و تقصيره، حيث تعتبر أن الإصابة بالالتهاب المفاصل (الروماتويد ) لا تقل أهمية و جدية من مرض سرطان الثدي فكلاهما يصيب النساء أكثر من الرجل -رجل مقابل أربعة نساء للروماتويد و رجل مقابل خمسة لمرض الذئبة و ثمانية لجوغرن - ..تكشف بشكل مقتصر تاريخ الإصابة بالالتهاب المفاصل في المجتمع الأمريكي و أشهر الشخصيات التاريخية، تستعرض أرقام و نتائج الدراسات و الإستطلاعات،تذكر اكتشاف أهمية الكورتيزون و تسميته، تناشد لحقوق أكثر عدلا لذوي اﻹعاقة، تعترف أخيرا بهويتها الجديدة ،تتفاءل بمستقبل واعد ﻷدوية متطورة تقنيا مصممة لكل مريض على حده
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تحديات واجهتها المصابة كونها من أوائل فتيات جامعة هارفرد بجانب أنشطتها السياسية و الداعمة لحقوق المرأة ،تبعها تحدي إنشاء أسرتها الصغيرة و رعايتها،سيرة تروى ضمن سياق الإرث الديني و التاريخ المرضي للعائلة و محاولات اﻹستقرار مع الزوج في ظل تطور المرض و العجز و دعم اﻷصدقاء و العمل كبروفسور تاريخ في الجامعة ضمنتها إقتباسات من مفكرتها اليومية و بعض من الشعر الشخصي

[Nikki · Rating 3 out of 5]

My first impression of this book was that it was really disjointed. I'm not making a joke of the author's struggle with RA, but that was the only word to describe how the story came across. Although at first I wasn't a fan of the writing style, I think that the author found a way to convey to the reader how the RA affected her life, her mind, her mood through her writing. So maybe this book is more successful than I initially thought.

I too have RA and did gleam some helpful information/insight even though Felstiner and I face much different paths with this disease. What we have in common (onset of RA within the year of having a firstborn at around 28) makes me curious about what lies ahead, but more than 30 years separate our experiences and I'm grateful that treatment of RA is significantly different now.

[Chris Nagel · Rating 4 out of 5]

The butler did it.