Suffering the Silence

12/04/2023

Thanks to Chronic Love Club for these reminders:
"We asked our community what they would want the word to know about chronic illness, and this is what some of them had to say.
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What do you relate to? And what would you add?"

01/04/2023

Last week, after recovering from a grueling two weeks with COVID, I found myself in the hospital. I braced myself for gaslighting, isolation, constant medical trauma triggers... and was met with the most support I have ever experienced. Not only was my hospital team incredible (and knowledgeable of my conditions... what?!), but the people in my life showed up in ways that brought me to tears.

It has taken years of pruning, loss, and intentional training of my friends and family, but I never thought I would see the efforts pay off quite like this. For anyone wanting to know how to show up for your sick loved ones, or hoping to communicate to your people what they could do to support you, here are five things people did last week that made all the difference ❤️‍🩹🙏🏻🌾 - Ari

20/02/2023

Check out Self_Saboteur's Race & Disability Zine Anthology, showcasing work from BIPOC disabled artists from around the world.

Self_Saboteur was a recipient of our We're Still Here micro-grant in 2021 and we are so happy to support this work!

13/02/2023

To close out , here's a feeding tube resource hub from Mighty Well! Helpful for patients with tubes, caregivers, or anyone wanting to learn more about what it's like to live with a feeding tube:

What is Tube feeding? How does a feeding tube work? Learn the answers to these questions, get tips for your feeding tube, find feeding tube supplies, and get feeding tube care recommendations in Mighty Well's Guide to Feeding Tubes.

03/02/2023

Image description: Illustrated text with a title that reads: "Things I'm Unlearning" and then lists: societal standards of beauty & diet culture, Seeking external validation over self-assurance, Distracting from hard feelings instead of processing them, Making myself smaller to fit into social situations, Pretending like I'm fine instead of asking for support, Ignoring my own boundaries to please other people, Believing myself worth depends on my productivity, Sacrificing my voice/beliefs to avoid conflict, and Not celebrating my accomplishments because "others have better ones"

27/01/2023

"There is no known cure for ME/CFS, but some experts say a complicated lifestyle change can help manage some of the symptoms. It’s called “pacing.”

Pacing is an “activity management” strategy, which requires people to carefully limit their daily activities, reduce their energy expenditure and track their symptoms...

While pacing can make a huge difference in quality of life for someone with long covid, it also comes with a cost. Pacing often means cutting back on both work and favorite activities like cooking, walking the dog, or socializing with friends. And it can represent a challenging reversal for people who, until very recently, have been accustomed to leading busy, active lives."

Image description: Woman laying on the kitchen floor with feet up on the cabinets. Caption: Daily tasks such as washing dishes require Kaia Arrow to take a break partway through.

Taking a lesson from people with chronic fatigue, many patients with long covid are dramatically scaling back daily activities to cope

21/01/2023

Hello! I'd like to take a moment to introduce myself... My name is Ari and I am thrilled to be joining the Suffering the Silence team as social media manager 😊 I am a teacher, artist, mom, and chronic illness advocate. I have lived with EDS / POTS / MCAS etc. throughout my life, but found some relief and much-needed community after my diagnosis at age 25.

You can read more about my story on my personal blog, or see some of my work on the Might Well blog, both linked in the comments.

Here's to community, solidarity, and the power of telling our stories!

Photo description: a headshot with a crinkly-eyed smile and dirty-blonde hair

10/01/2023

"...Professor Rodney Grahame, remarked at a conference that "no other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome." ...Progress is being made but on a very small scale. “If you look at any major academic institution, there are multiple labs studying cancer, multiple labs studying heart disease. When you look at a disease that affects one in 500 people, and probably more than that, there should be a lab studying it at every single academic institution,” says Gensemer."

Image description: Poppy, the author's daughter with short, ombre brown hair, smiles while sitting and holding her much-loved cane.

Hypermobile Ehlers-Danlos syndrome is a connective tissue disorder. When Sarah Lazarus' daughter was diagnosed with it, she discovered that the majority of cases are going undiagnosed for decades.

29/12/2022

"May your family and friends be attentive when you talk about your illness, your limitations, and your disappointments."

Seven New Year’s wishes that I hope come true for those with health problems.

21/12/2022

Being sick is hard. For anyone who needs a laugh today...

Image description: a photo of a lion falling out of a tree, from the Comedy Wildlife Photography Awards

Jennifer Hadley claimed the top prize for her photo of a 3-month-old lion cub tumbling out of a tree in the Serengeti region of Tanzania.

13/12/2022

"What is autism? I think if you asked five people that question you would get five different answers... the one common denominator is that we all exist in a world that is not built or designed for people like us to succeed and thrive."

There’s always a first. In this case, the first person was known simply as Donald T.

06/12/2022

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One step closer to adequate diagnostics and care for chronic Lyme patients!

"Researchers explain how they pinpointed a specific set of genes that are activated in people with long-term Lyme disease... The condition’s symptoms vary, but they can include fatigue, brain fog and pain"

Image description: a tick silhouetted on a leaf

A genetic test would be an improvement on current FDA-approved tests, which identify antibodies that can take weeks to emerge.

30/11/2022

“You’re not alone in whatever the struggle is whether it’s social, professionalism or health." Amanda Quick interviewed Mary Virginia Ireland for our blog this month. Read it it here:

How One Woman is Pushing Her Limits with a Rare Disorder By Amanda Lillian  Mary Virginia Ireland was 28 when she was diagnosed with CSID (c ongenital sucrase-isomaltase deficiency ), a rare GI-disorder that impacts only .02 North Americans, according to rarediseases.org. Ireland shares

22/11/2022

The holiday season is here, and we have a few reminders for anyone hosting:

1. check in with guests about their COVID concerns
You may not know who is immunocompromised, otherwise high-risk, or anxious. Simple precautions (like asking folks to take a free at-home test) can go a long way!

2. check in about accessibility and food sensitivities
A gluten-free gravy or holding off on migraine-triggering scented candles might make the difference in someone's ability to enjoy your celebration!

3. remember those who may be struggling
The holidays can be tough for anyone experiencing grief or strained family relationships. Think about if anyone you know may need some extra support right now and hold space for them when you can.

Here's to a wonderful season of love, food, festivities, and mutual support!

The beauty of holiday traditions is that they give us a structure within which to celebrate.  We make the same…