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.

Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions

" 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. "

Becoming an Informed Patient

Suppose you were just diagnosed with a health problem that is serious or will last for a long time. It's probably a complete shock to you and you can barely remember the terms that the doctor used when he told you the diagnosis. If you are back home with nothing in hand you could call the office and ask if they have any brochures or info booklets they can send you or that you can pick up. 

If you are at or near a hospital you could check on whether there is a patient library. If you make this a starting point the librarian can direct you to publications and pamphlets that are on hand, and also recommend some internet sites that are reputable and understandable. One advantage with a patient library is the variety of languages - they try to accommodate all patients in the language they are most comfortable with, another is the intelligent interest that the staff takes to help you.

                 Paul B. Helliwell Patient and Family Library at Toronto Western Hospital

You need to start somewhere and you don't want to waste your time on sites that try to sell you products that are both very expensive and ineffective. Don't forget, even a placebo (non-active version of medication) "cures" some people. If it sounds too good to be true, it is.

                                      Models in the patient library

The information from the doctor and hospital library should give you some ideas for further reading as well. It will help you a lot to know the "vocabulary" of the disease. Next time you go to an appointment you will understand more and ask better questions if you know the correct terms.

It is helpful to keep a record of your appointments, procedures, treatments and lab reports. A loose-leaf binder is good. It can expand as you need.  Another necessary item is an up-to-date list of all of your medications with dosages. Take these with you to all medical appointments. Here is a link to a post by Lisa Bonchek Adams about the way she uses her binder.

Another place to find information and possible support is the website of the national organization specific to your disease (best for common problems, less helpful for rare disease). As an example The Arthritis Society in Canada has information, videos and 'Taking Charge of Arthritis' programs as well as physiotherapists, occupational therapists, social workers and online community. Sites like that are a big help.

When looking at internet sites those that are .gov or .org are usually the most reliable.

Other health care professionals also are a good way to collect more info and ideas. If you see a physiotherapist or an occupational therapist they also have a little more time to look at You and help with encouragement and relevant personalized advice.

There are many patient groups that you can join but finding a good one can take time. I have benefited from advice and support on Rheumatoid Arthritis, Shingles, Sjogren's Syndrome and Fuchs Dystrophy to name a few. You often find a member or moderator who is a "patient expert" in these groups. Good ones usually point out that any advice they or the group offer is not medical advice so you should check with a doctor. Here is a Point of view blog post by Dr David Lee Scher about Online Patient Communities.

Often when you want to complain or talk about a problem you might not want to make those close to you worry more. Sharing with virtual friends takes pressure off of your real life relationships.

In any health category there are people who stand out clearly as well-informed patients and it's worth learning from them. They go further than just trying to help themselves. They share information and they advocate for more research, better treatment and change for the good. 

                                             Glastonbury Maze

With online communities you should make an attempt to find out who is behind the site and what the privacy policies are. That helps you find out the motive for the existence of the group. In Yahoo health groups as an example, you know that Yahoo hosts groups to deliver advertising for sponsors. That's clear cut. If you can't find a sponsor name when you look for it, it could be that the payoff for the sponsor is the information you provide.

Here are some bonus tips from good friends in my online support group. We've known each other for many years now.

Here's one from Roze:
"I learned early that my health was my responsibility.  I don't go to doctors who don't listen to me and if I have a question I research it and ask my doctor for his opinion.  When it's down to the wire for a decision on my care I realize it is my choice and my call." 

                                                                        Lulu

And great tips from Julie too

"For many years, I thought doctors were "God" and believed everything that they told me and went along with their suggestions.  I found out when my Mother was ill that some treatments probably weren't necessary or helpful and just caused suffering.

I decided then to become more informed.  I bought some medical books and carefully read them.  A man that I worked with that had ties to a big Medical Facility had the Merck Manual.  Although most of the language was for physicians, I could decipher most of the information.  The more I learned, the more I discovered that there were usually alternatives. 

When I first got RA, I didn't know anything about the disease.  I took every pamphlet from the rheumatologists office and read each one thoroughly (I still have them after 20+ years).

NOW - there is the internet with tons of information on any subject that you might like to know more about.  I am kind of a researcher anyway, so I spent quite a bit of time researching different health problems and medications.

I no longer submit to unneeded treatments or tests.  I learned that you can refuse a procedure if you want to do that.  Sometimes, I think physicians recommend tests just because they own the equipment and can make money by using them.

When I go to a physician with a problem, I research the problem first so that I will be somewhat knowledgeable.  Then, instead of giving the doctor MY diagnosis, I let him first tell me what he/she thinks the problem is and how to treat it.  I was guilty of going in and telling doctors what I thought was wrong and how to proceed. After all, I am paying the doctor for his medical education and experience.  If I disagree, then I will mention that perhaps another treatment might be better and see what the expert says.  I believe that people have to look out for themselves when it comes to medical care.

A brilliant professor that I had in college told his students to "pick other peoples brains".  I always try to do that and get information that I otherwise would not know.  I think that nurses that work in hospitals always have good suggestions and know who the best doctors are." 

I particularly like Julie's last 2 paragraphs.  

This is not a comprehensive list of suggestions. Feel free to add more in the comments. One thing missing is the knowledge and confidence you can gain by volunteering. Here's a link to my blog post called Volunteering With RA and another that talks about how volunteering expands your sense of time.