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Tuesday, 22 July 2014

Validation and Online Communities

I have read many blog posts and consistently hear stories about patients who are not believed when they report symptoms. From doctors to family to strangers, people with an invisible illness hear comments like "It couldn't possibly be that bad" and "Why are you using your mother's handicapped placard?"

For a sample of comments by doctors look at the end of this blogpost by Kelly Young of @RAWarrior. These comments made by doctors at the conference are not likely to be surprising to patients with inflammatory arthritis, but if we have not experienced this we have heard reports from other patients.

Just this weekend a friend said she wanted to see a blog post about the type of experience she had during a appointment during the week. Her main symptom was a serious and recent lack of energy. After she described her symptoms the doctor said "Joanne, you've had inflammatory arthritis for 30 years. Your body is getting tired of fighting." Knowing her own body as well as she does that response was not good enough but what can she do?

Tough as it is to get good treatment from doctors who don't believe you, imagine your family and friends echoing those sentiments. Here are some quotes from online friends...

"People don't think that you have a chronic, painful, fatiguing disease if you don't look too bad and they expect too much from you.  Even my own family wants me to be like "before" though they all know what I have been through in the preceding years. Their "forgetting" is selective depending on what they want from me even though everyone is thoughtful and protective of me most of the time."  Julie

"One of the teachers - I used to help out in her class, voluntarily I might add. When I had occasions that I just couldn't stay on to help after work, I got the impression that she didn't quite believe that I was as bad as I said I was. She would often use the phrase, you’ll get better one day."  Sue

You're looking good today

"“You look so good, so young!” Oh how I wish I felt that way!!!!! No, people don’t understand. They don’t understand how when I hurt that it drains me and I just can’t do it all any more and have any energy left after. I’m going to vacuum today and that will pretty much drain me. If I go somewhere, that is all I do. No housework on those days. " Jeanie

"People come up to me and say "oh you're looking really well " and I actually feel like c**p..lol." Pam

Some weeks it sounds as though almost everyone with an invisible illness and a disabled  parking permit has been a subject of comments and nasty notes.

Nanaimo disabled parking decal

All of this takes a real toll on patients. There's a term for it too - Invalidation.  In fact "In patients with rheumatic diseases, invalidation has been shown to relate to worse physical and mental health and more pain." as seen in this recent study from the Eular 2014 abstracts.

The paper starts off with this statement  "The term invalidation refers to the patients’ perception that their medical condition is not recognized by the social environment. It includes non-acceptance, misunderstanding, disbelief, rejection, stigmatization and suspicion that the problem is exaggerated or purely psychological."

Here's another paper. This one assesses patient's perceptions of responses from others in an attempt to develop a measurement scale.
"The Illness Invalidation Inventory (3*I) assesses patients' perception of responses of others that are perceived as denying, lecturing, not supporting and not acknowledging the condition of the patient. It includes two factors: 'discounting' and 'lack of understanding'."

More awareness and more respect for patient reported outcomes will help on the medical side of things. Collaborative medicine may also make a difference as Drs try to engage patients in the decision making process.

It helps patients to find sources of online support. In one support group I know well members agree that it is a good way to talk about problems and fears for now and in the future without worrying the people closest to them. In these groups there is usually very little skepticism from other patients. That experience of acceptance and support, along with practical ideas can help to counteract invalidation in other areas.


OHCs (Online Health Communities) help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. "

3 comments:

  1. Thanks for this post, Annette - it's an important point, and one that's too often dismissed as a case of patients being too whiny. Unfortunately, many encounter cases where they are not heard by the doctor, and the figures you quote support that experience.

    Hugs,
    Jane

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  2. When I saw the term invalidation it reminded me of so many stories and comments from the past. Maybe that's why online communities and friendships are so solid. We just haven't heard many unbelievable stories or found many blogs where we did not believe what people were saying.

    Sometimes no matter how carefully you explain your symptoms you still don't see the hoped for response.

    I am not as optimistic as I used to be anymore, but at least I turned the invalidation that I started with into a validation message. The end was not in sight when I began to write the post. Happy to see you again.

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  3. It just rings true that invalidation makes your condition worse. Not being believed in my twenties when I first got ill was just crazy-making, and then you add the mind-body feedback into the loop and it's no wonder one feels more ill. Integrity was always one of my most deeply held core values, and I became convinced that the doctors thought I was lying.

    Now I am older and wiser (?) I see that it's something more subtle. Failure to listen is purely a sign of disrespect on one hand and ego on the other. It says that the patient is not worth listening to and that the doctor knows it all. Both assumptions are incorrect. I love that, as you observe, as a community, patients have so much more respect for each other and that means being open to someone's experience, no matter how it diverges from your own.

    I like it when one starts a post feeling downhearted and then digs the nugget of gold out of it. That's the healing part and I think is at the root of why many people write - to find meaning in situations that are hard to comprehend. :)

    And yes, it's good to see my comments are taking this time. :) <3

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