Patients for a Moment: What it feels like

Thursday, September 19 2013

Welcome to Patients for A Moment for September 2013, the blog carnival for patients, of patients, and by patients.

This month I asked contributors: what does your diagnosis feel like? I got a lot of great responses — by which I mean penetrating looks into what it’s like to live with various diseases. This has easily been one of the most interesting PFAMs I have hosted. I hope you get as much from these bloggers as I have.

Normally we don’t call out diagnoses in PFAM, but this month’s topic sort of asks for it: you’ll still get, from reading each post, the sense of shared experience common across diagnoses. So then, in no particular order:

Abigail Cashelle at Hidden Courage says her diseases make you “feel like you’re buried under a mountain of mattresses and like you can’t get out.” Her post is titled “What Chronic Fatigue Syndrome & Ehlers-Danlos Syndrome Feel Like”.

Aviva at Sick Momma runs through the list of awful in her post, “What my Chronic Illness Feels Like“, but ends on a beautiful note: “gratitude”. I’ll let you see for yourself how she gets there. Her primary diagnosis is still unknown.

Leslie Rott at Getting Closer to Myself reports on her recent move, and how the new environment (New York City) has changed the way her illness feels (that would be RA).  She finds the city exhausting and wearing and wonders how she’ll make it through the day. Leslie is doing exciting things in patient advocacy, so we all wish her the best — and some rest — up there in New York.

Rachel at Fluted Cups & Ampersands has a funny if non-directional post in which she explains “What Illness Feels Like” pretty bluntly: “Total shit, really. I’m not going to lie about it.” Rachel’s main dx is ‘autonomous dysfunction’, and I can’t even begin to list her secondary diagnoses here. Just in case you were looking for a blog by someone who ought to be utterly crushed but is still kicking hard, FC&A is it.

Lorna K. at Life With RA is a Pain (she also has Lupus, Sjogren’s, and Raynaud’s) titled her post, “Hazardous If Touched”: she writes of her disease, “Imagine your worst day with the flu, now multiply that by 1000, the fatigue so bad you can’t get out of bed. I feel like that everyday but I do get out of bed.” I am not sure I could get out of bed, so I am impressed that she does.

Shruti at Lifestyles of the Ill and (Mostly) Blameless goes deep in her post “I feel…”, and gets to talking about the pretense of health she puts up against lupus: “I often feel like I’m constantly acting. I pretend to be feeling all hunky dory when really I’m in so much pain that I could cry. I pretend that I’m not about to fall asleep. […] I pretend that I can brush off peoples’ dismissal of the reality of my illness, even when it sometimes feels like someone punched me or as if I’m talking to wall.” I think most of us have been there, but Shruti nails it.

Emily at Migrainista  (that, and fibromyalgia) focuses on the how isolated she feels in her post, “What it Feels Like”: “I feel like a freak, a misfit, a square peg in a world of round holes.” The best we can do is to start carving round holes in the world: I’ll let you know if I ever get one finished.

Let’s all enjoy a musical interlude: Tom Petty’s “You Don’t Know How It Feels”, one of my favorite songs.

I think Tom is being a little tongue-in-cheek in this song, poking fun of teenage disaffection, but the song definitely has face value for many of us.

A few more posts follow, but first a note: We put together questions (called ‘prompts’) for PFAM, and usually participants write a post to answer the question. But we know it’s sometimes hard to come up with a blog post from scratch. In fact, when PFAM started, I avoided prompts: I just wanted to see what was on folks’ minds. But now we do prompts, and that’s cool, but you can always participate if you have a post you want to share, even if it’s not directly on topic. So while the following posts were not written especially for PFAM, they do have some good insight into various conditions.

Kairol Rosenthal at Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s writes about “Coping with odd symptoms”, and describes a new drug that “made my body and mind feel like they were being pressed through the holes in a metal cheese grater”. Graterol™: the wonder drug that makes you wonder why the f— you took it, new from the makers of Tunofbrix™. Kairol has thyroid cancer.

Mike Hoskins at DiabetesMine writes that blood sugar ‘highs’ feel like “we’re stuck in molasses. Tired. Can’t get motivated.” But lows feel like disappearing, like hours have been stolen from your life. His post is “Going Low and Losing Time”.

Kathy at FibroDAZE writes that aging with illness is “Not For Sissies”. She describes the products and routines necessary to deal with dermatitis and ichthyosis, both skin conditions. She says with all these products and chemicals, “I start to feel like my own science experiment.”

My own contribution, also not written for the prompt, is  “What Does Crohn’s Feel Like Redux”, which grew from an earlier post, “What Does Crohn’s Feels Like”, which explains that the movie Alien was inspired by a screenwriter’s stomachache: he had Crohn’s, and an alien eating you inside out is more or less what it feels like.

Thanks to everyone who participated, and everyone who is reading. I am told that next month’s edition will be hosted by Lorna at Life With RA Is A Pain.

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One Response

  1. Mike Hoskins September 19 2013 @ 3:34 pm

    Thanks for the mention! Definitely honored to be in such great company of awesome writers and patient advocates. Yes, it isn’t fun living these conditions, and thinking about those feelings isn’t the most exciting thing to think about, but it’s so good to hear these different perspectives and be able to learn. Thanks for the post!

One Ping

  1. I feel… | Lifestyles of the Ill and (mostly) Blameless September 20 2013 @ 10:57 am

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