Chronically Something

Chronically Something 231

thespoonfairy:

just no.

I can’t relate to a post more than this.

11 May 2013 ·

Chronically Something 24

When you say nothing at all: Living with an invisible illness

From the Stanford Scope medical blog

Imagine you’re a busy specialist, preparing to meet a new patient in your office…

You note that your patient only slightly smiles and seems a bit distant. Many of your patients come in with three backpacks full of medical records, yet she has nothing. If this patient is so ill, where are all her labs and tests? You note that she’s watching your every move, and you can’t help notice that she’s mainly watching your face. Where is her laundry list of symptoms and complaints, you wonder. You ask her what’s going on and what brings her in today. In a quiet voice she answers, “I’ve had pulmonary sarcoidosis for four years, and I’ve been having facial and hand pain for two years, and no one knows what’s wrong.” You’re puzzled by her, wondering why she’s monotone and aloof. Do you ask yourself, “Is that it, just one sentence from a chronically ill patient?” And do you feel concerned – or lucky?

As a person with a so-called invisible illness, my behavior at my last appointment with a specialist mimicked that of the patient in the scenario above. Why did I act this way? Because I was afraid to be there, and because I had low expectations for the visit. The behavior of past appointments with family practice physicians and specialists have numbed me to their raised eyebrows and the “look-away” that represents disbelief. I already know when the arms are crossed and the chair rolls back that the doctor’s next questions will be, “Are you sure it’s not stress? Do you exercise? Are you on antidepressants? Why don’t you see your psychiatrist, or try a different medication?”

There’s a major communication gap between chronically ill patients and some physicians. I don’t criticize every doctor by any means. But I feel that not enough physicians understand that both doctors and patients want and deserve respect, and to be heard. Patients don’t want to feel dismissed…

Well said and too true. I have exceptionally strong feelings about this. Too tired to rant.. but I’d like to add one thing.. I think that most every doctor has some of these sentiments in them. I wonder if its possible for them to understand at all sometimes. I have a neurologist that I generally trust and feel comfortable with.. or did.. do … I don’t know. When you find someone and start to feel more comfortable, when you make the decision to trust and express yourself more only to be comforted by even slighter versions of the same old dismissiveness… its very much a PTSD style trigger. When the doctor you trust and felt like you could actually express the true detriment of your symptoms with suddenly seems to look at you with that “hmm maybe you’re jumping on the learned helplessness bandwagon” It not only makes you want to retreat to that shell of quiet defeat even more than before.

Its frustrating and painful and, as someone who was miss diagnosed for years and then told if I had had more regular care things might have been picked up on sooner (after a million doctors saying all of the above and worse), its a vicious cycle. A painful one that surely leads to depression if you weren’t there already. And again, I question the differentiation and the willingness to use such a term to dismiss patients regardless.. Cause label or not, if you’re suffering from a chronic illness your life is being impacted negatively and thats depressing. Why is that so difficult to understand?

23 April 2013 ·

magnumoctopus:

I feel like there is such a fine line between helping and hurting with those posters or posts that compare mental illnesses to physical illnesses.

It just kinda turns out that a lot of my friends have chronic illnesses, mental and physical and sometimes both.

I just feel like there’s a lot of erasure going on in those posts.

A friend of mine has cancer, he was fired for going to the hospital and missing a day of work.

Another friend has lupus. And she’d get shit on at work by her coworkers for complaining about her RA, or fatigue.

Physical illnesses can be just as invisible as mental illnesses.

15 April 2013 ·

Chronic illness apps?? 16

Chronic illness apps??

jayneysgotagun:

Has any one found any useful apps for chronic illness,pain or fibromyalgia? Please am on the hunt for some to try out ?

I’ve found a few but none that really help. I’ve actually been considering designing my own. Well, actually started outlining etc.. Was gonna ask here…so now I will…

if you could have a dream chronic illness app.. what would it do ?

(via wheeliewifee)

11 January 2013 ·

Dear Everybody Ever,

whatsortoftime-doyoucallthis:

Just because I don’t look sick, doesn’t mean I’m not.

-Me

5 January 2013 ·

lala 2

lala

canteatbreatheorsleep:

In slight addition to the aforementioned, I go through phases of completely longing for human affection and then switching to total misanthropist mode. Now, i’m in my ‘longing for affection’ mode. Maybe it’s because i feel so completely empty inside i just need something to bring me back up to earth, and i feel like maybe if i had someone who was genuinely interested in me as a person and not my fucking symptoms/asthetics/limitations/failures/freakish behaviour as a result of the previous, then maybe i might actually have a reason to feel almost human like again. I miss conversations that would end in the early hours, I miss that connection, I miss just feeling wanted and needed and even special? I miss it. I’ll never get that back because I have declined in more ways than one, physically, literally, metaphorically, mentally etc…everything you name it and i have well and truly declined in it. So i’ll never feel comfortable in that scenario again because of how anxious and paranoid and depressed and ugly i have become because of my ever present tortorous pain levels and distressing symptoms hacking away at me like a chainsaw. Yet still i long for such affection even though I wouldn’t know what to do with it, probably push it away lest I let down my guard and become exposed and vulnerable and that terrifies me because i’m not ready for that. AH contradicting life and times of myself.

I want to write a novel, as well. I feel like everything in my head, needs it’s own book. I can churn out sentences like my body churns out it’s undigested food. In seconds. meh.

10 December 2012 ·

Chronically Something 169

theretiredbridgeburner:

(via fibromyalgia-fairy)

8 December 2012 ·

Having new symptoms with no answers is almost more frustrating than not having answers for your other symptoms! 13

Having new symptoms with no answers is almost more frustrating than not having answers for your other symptoms!

(Source: sickgirldiary, via sickgirldiary)

1 December 2012 ·

Chronic Illness Tip No. 1: 9

Chronic Illness Tip No. 1:

instructions-are-included:

Don’t ever start to do your research on that gene mutation you might have at 1am. Just don’t. Especially when your test results come in the next day.