Arthritis Affects More Than Your Body

In the post about "Changing Shoes" Dr. Backman showed how that image came to symbolize what we've lost with inflammatory arthritis.

That led me to think of writing a post about the psychosocial aspects of living with Rheumatoid Arthritis, only to realize that this is a topic for a book, not a blog post. Still, not starting at all is accepting defeat too soon. 

Here's a relevant paper that I found among the first results of a search - Arthritis and Pain. Psychosocial aspects in the management of arthritis pain. It's not new, but when was the last time you saw anything happen fast in arthritis, with the exception of flares? The study is a perfect follow up to the shoes metaphor since Dr. Backman wrote this paper too.

To start with a definition and a direct quote from the paper:
"psychosocial factors refer to two dimensions of experience: the psychological (cognitive, affective) and social (interacting with others, engaging in life activities)".

The impacts that arthritis has can be seen in all parts of our lives, but pain is a huge topic that we are not able to ignore. It can result in what used to be small tasks, like getting dressed or washing your hair, becoming more difficult. Many activities start to take more thought and effort. 

Pain can also be difficult to predict or explain when others can't see it. You can look fine but it gets more difficult to make plans and commitments. It takes a toll on your self esteem too when pain is physically and emotionally exhausting and overwhelming.

Arthritis has impacts on our families and on our communities too. It was a huge change to my family when I was suddenly too tired and sick to be consistent in what I was able to do as a mom. I know it had an effect on my children.

With my husband, I worry. I saw the toll it took on my Dad and my father in law when they had to assume the role of caregiver when both my mother in law and my own Mom had health issues late in life.

The bulk of the cleaning and shopping fall to him now, and when I was too tired to socialize after working a full week, he also missed many get-togethers.

It's a balancing act

In my work life the stress was more a pressure to achieve results that it was physical, but that was in the job I found after it became evident that working full time in a bank took too much physical effort.

What many people find is that their whole lives change and dealing with illness and changes at the same time is very challenging.  I'll let Julie talk about some of the changes she has seen in her life.


"I think the biggest problem that I have socially is not being able to plan much in advance.  I don't know how I am going to feel on any certain day.  Sometimes, I will accept invitations with the understanding that I might not be able to make it depending on how good or bad I feel that day.

 

Clothing and shoes is also another consideration.  Trying to find something that looks kind of dressy and nice while wearing really clunky, orthopedic type shoes is a problem.

 

I try to never plan anything for the morning before 10:00 a.m.  It takes me that long to eat breakfast, take my medications, get dressed, etc.  I have to plan to go slow in the mornings - so no early morning socializing for me anymore.

 

When younger, I used to be much more sociable, but I have to limit the socializing  now.

 

I think it is all about knowing your limitations and accepting them".

Julie's outdoor cat, Grover

Changing Shoes: The Impact of Arthritis on Self Identity and Roles

Dr. Catharine Backman is a Professor and Head of Department of Occupational Science and Occupational Therapy at the University of British Columbia and a research scientist at the Arthritis Research Centre. She got the biggest response on the #eROAR twitter stream talking about her research on ways arthritis can change your self-identity.

Sam Bradd's graphic depiction of Dr. Backman's talk

Dr. Backman has done two studies about self identity and role changes, and said the most powerful example of the loss of self was the shoe metaphor. "We lead storied lives and the narratives and metaphors we use help us and others to make sense of our experiences."

"Changing shoes" represents not only a physical adjustment to accommodate pain, but also part of an internal process of reshaping identity. It is a very constant symbol of loss of professional self, stylish self, working self. Women eventually "gave up" their shoes and found a new sense of self or an identity no longer represented by the old shoes"

One of the contributors said that if you were more sedate and always wore granny shoes this issue may not turn your life around, but I don't know anyone under 50 who feels like that. When I went to a shoe store looking for style and comfort at the onset of arthritis, and they showed me the granny shoes I almost walked out (almost cried is actually more accurate). I ended up with green leather lace up boots and that helped.

These shoes are not cool. Will never buy shoes like these

Part of your life is gone, it's an internal process of reshaping identity symbolized by shoes.

.@cath_back at #eroar: how can the experience of living with #rheumatoid #arthritis change how people view themselves?

Important to share stories of how people came to transition to new identity with #arthritis #eROAR @arthritis_UBC

"Flat shoes meant pants and never wearing dresses...my life became different...after a few years RA just wasn't getting better"

Experiencing #RA - a transition story: Giving up steel-toed boots = giving up the job. Flat shoes = never wearing dresses #eroar  ARC

Very true! @anetto: Shoes is a transition story, and it's not a transition people want. #eroar@mettamarillee

For women: the type of shoe worn mirrors the life being lived> high powered work/ special occasions all accompanied by elegant shoes. #eROAR

Metaphor of changing shoes represents many losses occurring as part of living with #rheumatoid #arthritis #eroar

@Arthritis_UBC @Bonnycastle @nxtstop1 @cath_back Finding like minded people a big help. They're in mourning too for cool shoes

Past blog post of my own about shoes and life changes  http://yourgoldwatch.blogspot.ca/2013/01/cry-me-river-of-shoes.html …

@Bonnycastle @nxtstop1 huge adjustments to 'who I am' - @cath_back suggests finding like-minded people via online groups/blogs could help

You all just gave me my next blog post idea. I have so many pretty shoes mourning in my closet! Along with outfits. My closet cries! @RareCandace

@Bonnycastle @Arthritis_UBC  Oh how wonderful ~ life : turning lemons into lemonade

MT @sarahlance: @nxtstop1 @maryadevera I have arthritis & plan 2 hike again. worry re perception we get as person w/RA,stereotyped...

Reading your stories makes me glad I can still look like I'm in college, so flip flops, flats, boat shoes. I'm very "Miami"


“@AfternoonNapper: MT Oh, ladies... this has been a HUGE thing for me. Would love to discuss. In a meeting right now though.

I spy a discussion about shoes. My inner fashion diva gushes. I had to give up heels after DX. Too dangerous/painful! @RareCandace

#eROAR Putting old shoes away/giving to charity carries great meaning to 'Who I am' - transitioning to new identity with #arthritis

Not always a bad news story, people find new shoes, new identity, new role, including advocate #eROAR @maryadevera

Shoes are part of our foundation. Changing is difficult-who am I now?. #eroar

Dr Backman's research about Changing Shoes really resonated. Felt so much "less" at professional meetings in ugly shoes #eroar

Changing shoes...represent profound loss of sense of self in rheumatoid arthritis #eROAR

Help seeking process. It's so hard to have to ask for help. It is part of identity change, along with shoes me

@nxtstop1 Yes, agree. My shoes are very ugly and it was (and still is) an issue though less now

Issue of shoes and arthritis: uh oh.... my issue :( have to wear low heel shoes,try to make stylish (gone are the stiletto days.. lol) #eROAR  @nxtstop1

What do shoes and family dinners have in common? Metaphors in rheumatoid arthritis patient experiences.

Implications of the research:
from Dr Backman's slide.
"Appreciating how seemingly small changes carry great meaning with regard to one's identity may foster more effective patient-provider communication and client centered practice.

Yes, shoes are a big deal to many! but more importantly, they represent some poignant losses that accompany chronic illness".

I can see this happening myself in some relatives. My mother in law just could not give up her impractical shoes after she became ill. I've had a long time to change my own life and adjust to what I still call ugly shoes. It can't be done overnight, and yet we were all very impatient when she stubbornly refused to change. Not many women want to wear "sensible shoes" and, as Preston pointed out later in the day, neither do men.