the spoonie life documented.

Documentary nerd that I am, last night, when I was back awake after an hour of sleep – Happy Hurricane Week to me – I turned on Amazon Prime Video and started geeking out.

I actually watched two films during the night, between naps,  but the one that I want to really talk about is called “Funny, You Don’t Look Sick.”

“Funny, You Don’t Look Sick” was made from 1995 – 1996 by Susan Abod about her life as a sufferer of Chronic Fatigue Syndrome (now more commonly known as Myalgic Encephalomylitis) as well as Multiple Chemical Sensitivities (a form of severe allergies – or what we would now call Mast Cell Activation Disorder).

Honestly, it is along the same lines as an older version of Unwell, Jennifer Brea’s film I wrote about a few month’s ago – but it is more hopeful in a way – despite her struggles. And, bless, does she have many. She is far less privileged than Brea, surviving on disability, food stamps, and section eight housing. In addition to that, her landlord was selling her building at the time – and her living requirements are VERY specific due to her allergies so finding new housing is incredibly difficult. The film takes the viewer on that 16 month journey, as well as going along for her healthcare challenges.

Also, like Brea, her CFS – and subsequent MCS – was triggered by the flu, so the frighteningly random nature of the illness does come through clearly.

Most moving to me, like Brea’s film, Abod’s film discusses the high rate of suicide in this community. The difficulties living with these symptoms – the extreme fatigue, the isolation, the complex living requirements and frequent homelessness as a result – are just overwhelming for many sufferers and the suicide rate is now six times that of the healthy population. It is truly heartbreaking.

World Suicide Prevention Day was earlier this week – September 10th – and I absolutely love this campaign by To Write Love On Her Arms.

Finally something that really resonated with me, a huge motivator for my writing, at the end of the film, in Abod’s support group, another member says of having a creative outlet, “It’s learning just how important the creative process can be when you are ill. . . Saying “I am,” affirming that you exist.” This is so important sometimes for the chronically ill. It is so easy to feel like we disappear at times as we lose our careers and find ourselves more and more homebound.

I often watch documentaries made by other spoonies both because I can relate to them and because I can learn new things from them.

For example, though I do not have CFS or MCS, unfortunately, many autoimmune diseases share common symptoms.

With my RA recently I have been battling absolutely overwhelming fatigue. I often have to rest several times a day. I will have periods where I can only sleep for an hour or so at a time – and then suddenly I sleep for hours and hours on end and still am exhausted.

This week has been terrible with fatigue and pain.

I have also had to learn about food and environmental allergens on a whole new level since my testing – and it has been so challenging.

For example, soy is literally EVERYWHERE in processed foods – and, while I am an advocate of a whole foods, fresh diet, that is difficult to accommodate with this insane fatigue. In fact, my next post will be about diet and what I am working towards on that front – because I am allergic to so much.

So I can relate to many things that these women are experiencing.

I encourage everyone to watch both films, even if it is just to understand what chronic illness patients experience.

“Funny, You Don’t Look Sick” is free with Amazon Prime and “Unwell” is free on Netflix.

Abod’s Funny, You Don’t Look Sick
Brea’s Unwell

You can also follow Susan Abod and Jennifer Brea on Facebook.

As for me, Henry and I are off for yet another nap and then we have some more documentaries lined up as well as our quiet time and some books to read.

And then we have a nutrition post we are anxious to write.

And, as always, you can find us here and on our Facebook and Instagram.

Be well, everybody.

Grace and Blessings.



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