Tag Archives: coping

“It is no bad thing to celebrate a simple life.”

Posted on October 7, 2018 by Jennie Spotila

It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable. And this year, I hardly noticed. … Continue reading →

Posted in Occupying | Tagged action, balance, coping, family, friends, grief, living with, occupy, persistence, personal, sickaversary, strength, stress, suffering, triumph, victory | 44 Comments

How To Be Sick . . . Again!

Posted on October 2, 2018 by Jennie Spotila

Toni Bernhard has just published a second edition of her classic How To Be Sick, or as I like to call it: The Book That Will Make You A Better Human. I have relied on How To Be Sick since … Continue reading →

Posted in Commentary, Occupying | Tagged book, book review, Buddhism, coping, detachment, easy, family, gratitude, living with, mindfulness, occupy, pacing, pain, spiritual, stress, suffering, Toni Bernhard | 6 Comments

Taking Care of Your Self

Posted on September 18, 2018 by Jennie Spotila

Self-care is one of those internet buzzwords that people casually throw around, as if a coloring book or a kitty will solve all your problems. I’m not knocking coloring books and kitties, but generally I think that kind of advice … Continue reading →

Posted in Occupying | Tagged action, capacity, control, coping, creativity, emotonal, exercise, family, friends, frustration, funny, laugh, limitations, living with, love, music, occupy, pacing, pain, persistence, personal, self-care, spiritual, stress, suffering, survival | 22 Comments

After The Afflicted Freak Show

Posted on August 21, 2018 by Jennie Spotila

Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading →

Posted in Commentary | Tagged ableism, accountability, coping, disability, family, invisible, living with, mental illness, Millions Missing, occupy, pain, prejudice, psychogenic, psychological, psychosocial, speaking out, suffering, visability | 18 Comments

Talk To FDA About Chronic Pain

Posted on June 1, 2018 by Jennie Spotila

The FDA wants to hear from people with chronic pain, and is hosting a meeting on July 9, 2018 to collect public input. I have chronic pain, and I know that many of you do as well. This meeting is … Continue reading →

Posted in Advocacy | Tagged action, coping, drugs, FDA, government, living with, occupy, pain, pain management, patient, patients, PFDD, speaking out, suffering, testimony, treatment | 5 Comments

One Dance: Millions Missing 2018

Posted on May 12, 2018 by Jennie Spotila

I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading →

Posted in Advocacy, Occupying | Tagged accountability, action, activism, anniversary, coping, family, funding, government, grants, grief, living with, loss, medical education, Millions Missing, NIH, occupy, politics, post-exertional malaise, priorities, speaking out, spending, suffering, treatment | 23 Comments

“Take Care Of Each Other”

Posted on January 26, 2018 by Jennie Spotila

“Take care of each other.” Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a … Continue reading →

Posted in Commentary, Occupying | Tagged acceptance, adapting, community, coping, crisis, death, dying, faith, family, friends, grief, honesty, hope, isolation, living with, loss, love, occupy, pain, persistence, self-care, speaking out, strength, suffering, suicide, support | 38 Comments

Expectations

Posted on January 6, 2018 by Jennie Spotila

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →

Posted in Advocacy, Commentary, Occupying | Tagged accountability, action, activism, advocacy groups, anger, awards, awareness, community, coping, fierce, film, frustration, government, honesty, living with, media, Millions Missing, occupy, politics, press, publicity, represent, resist, self-care, speaking out, stigma, suffering, team work, triumph, truth, unrest, victory | 27 Comments

Better Late Than Not At All

Posted on November 23, 2017 by Jennie Spotila

Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →

Posted in Occupying, Uncategorized | Tagged balance, coping, crash, disability, family, gratitude, grief, living with, occupy, persistence, personal, strength, stress, suffering, truth | 16 Comments

More Thoughts on Suicide

Posted on November 16, 2017 by Jennie Spotila

Last week, Johanna Haban provided some important resources and information for people with ME who are overwhelmed or are contemplating suicide. This topic is complicated and very important to discuss, so Johanna and I spoke further about issues related to … Continue reading →

Posted in Occupying | Tagged community, coping, crisis, death, dying, guest post, honesty, hope, living with, occupy, pain, psychosocial, resources, speaking out, stress, suffering, suicide, support | 9 Comments

Tag Archives: coping

“It is no bad thing to celebrate a simple life.”

How To Be Sick . . . Again!

Taking Care of Your Self

After The Afflicted Freak Show

Talk To FDA About Chronic Pain

One Dance: Millions Missing 2018

“Take Care Of Each Other”

Expectations

Better Late Than Not At All

More Thoughts on Suicide

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