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. "

RA Circus - #ChronicLife

In reading a blog yesterday someone was laughing out loud about the Elephant on the Trampoline as an antidote to gloom. Humor is a great way to get temporary relief from almost everything undesirable.

The elephant made me think of the circus of course and those vintage posters I love to look at.  It also makes me think  of this successful strategy that got me through years of gloom after my diagnosis with more optimism and some unexpected bright spots that helped me through some tough years.

I would also say that (insert your disease here) is the "elephant in the room' for many of us. It takes up so much space in our lives that we would rather use another way. 

Getting a diagnosis of inflammatory arthritis is a bit like being shot from a cannon - it's scary and a huge shock coming out of the 

cannon and you can't be sure how the landing will go for you.  The diagnosis may be only the beginning of a different and more difficult phase of your life. Hopefully you will be one of the people who can achieve remission fairly fast.  To do this you need to see a rheumatologist soon after your symptoms appear and ideally you will respond well to medication. This now happens far more frequently than when I was diagnosed decades ago.

People talking about your illness may say "Look at that brave girl and her amazing exploits dealing with a serious illness" (at the best) but it's a lot like trying to tame a wild beast and you never know when it will turn on you.  It's important to keep practicing the measures that keep it under control for you. You can't turn your back on an opponent like this. 

Keep your eyes on the tigers.

As Dr Keystone said in  a lecture a few years ago "RA is a medical emergency" That statement is a call to action. (I will comment that  the lecture was inspiring)

One thing we all do with RA is juggle.  Medical appointments, doctors, family, fatigue, pain, work and worry about the future. That's a serious amount of stress to deal with.  I would like to cultivate a teflon personality so that none of the stress  would stick to me. The flip side would be the velcro personality which sounds like bad idea.

In this article about the brain though there is a statement that the brain is velcro for negative experiences - they stick and good memories are easily forgotten, so we need to work harder to overcome the negative and make more good memories. Some ways to do this are through positive emotions and cultivating the "relaxation response", which includes humor as Kelly Young aka RAWarrior says,.   Auntie Stress has a good post about kindness as another way to lower stress. 

Since this is a circus it's no surprise to see the next act involve great skill and agility. RA is a balancing act and with the feet I have now that is literally true.  I walk very carefully and try to do balance exercise.

With any chronic illness you need to enjoy yourself at least some of the time.  I once had a talk with a social worker from The Arthritis Society and an important piece of advice she gave me was "Have more fun".  Working, housework, social obligations all go better with fun.  My friend finds Doris Day movies enjoyable and she's a Dallas Cowboys fan too.

Over the years so many people in the know, like physios and moderators in Arthritis Self Management courses have suggested that exercise in a warm pool would benefit me.  I believe it but the energy expenditure equation keeps me from doing it.  By energy equation I mean this. The time to put on my bathing suit, dress, drive to the pool, park, undress and shower and then to do all that over again in reverse just does not seem to be worth the effort for only 1/2 hour of exercise.  Maybe if it were this much fun I would do it.

Water Circus

Madame Yucca looks like an amazing woman. I'll never be that strong but I do try to maintain strength by just doing simple isometric (muscle tightening exercise) and I have been doing Arthro-Pilates for years now with Lori Weisbrod (Toronto).  I love exercise that you can do lying down.

The topic of today's blog carnival is how to keep disease from taking over more of your life.  I can see that as a necessity but at this point for me the RA is well integrated and I no longer think of life without it because it is the house guest you can't get rid of.  

Once you have damaged joints, even if the other symptoms are controlled, the mechanical effects of the damage will continue.

When I was working my job was so interesting that I was not thinking much about pain for large periods of time. I used work to keep the RA from taking over even though I had to adapt.  Now that I have retired I find blogging is an enjoyable occupation. Creative outlets are good for the soul, no matter what you produce, from books to baby clothes to beautiful pictures. I totally forgot the RA when I was looking for these circus posters.

This blog post is part of a carnival. Please visit all the posts in the carnival. Here's the topic and a link.

How Do You Keep the Disease from Taking Over?

The Most Exciting Time in the History of RA

The treatment of inflammatory arthritis has changed dramatically over the past 15 years and the talk I am blogging about is a great introduction to anyone with a new diagnosis.  

I was there at this presentation and have recommended it to many people since.  It's a good way to get a basic understanding of inflammatory disease and the treatments.  The mechanisms of action of the various treatments are well described. 

Dr Edward Keystone is a dynamic speaker and also Director of The Rebecca MacDonald Centre for Arthritis and Autoimmune Disease  - a center devoted to research into genomics, therapeutics, and outcomes in autoimmune inflammatory joint disease and osteoarthritis. It is part of  Mount Sinai Hospital in Toronto.

Dr. Keystone gave a talk in 2010 that is still relevant, even though many more drugs have been introduced in the years since then. The title of the talk was The Most Exciting Time Ever in the History of Rheumatoid Arthritis and used to be found on the site of The Arthritis Society. 

                                   And it's even better now

It's a long talk and he starts speaking 10 minutes in after the intros.  He describes what RA is and makes the scientific information about biologic drugs very understandable. It would really help someone faced with a treatment decision or a new diagnosis of inflammatory arthritis.

Here are some of the points that he made:

If the joints are swollen they will sustain damage

Aggressive early treatment is important

RA feels like a fire in the joints.   (In this post you can see I described the rheumatologist as a fireman)

RA is a medical emergency.

Tight control is the best strategy. Adjust therapy frequently to reach the target, which is now remission.

You start with methotrexate ...

                                Fun Wow Methotrexate injection time

This talk is one of my favourite resources.  Dr Keystone's enthusiasm is infectious.

I had hand surgery just before I wrote this blog post.  I needed the surgery because of early damage that happened before I was diasgnosed and had good treatment.

There were no fun pictures to see under hand surgery. (they were informative but not for everyone) This is not too bad though.

I was going to blog about wrist fusion but I am not sure how many people are interested in something that is done less often now.  At the moment I am taking the ostrich stance on it.  It's easier to stay calm that way.

I did not know ostriches really did this.


** Here is another excellent resource for a patient facing a treatment decision.  It's a blog post by Dr. 
Shashank Akerkar called Time, tide & inflammation waits for nobody...
He followed that up with another that is very informative History of Rheumatoid Arthritis that shows the pace of progress in treatment.

So, the doctors weigh in, and seem to agree on the best course of action. It worked for me - with good treatment I worked until I retired. Honestly, it was no picnic but it was a goal that meant a lot to me.