Wednesday, November 17, 2010

What Causes Rheumatoid Arthritis Un-Awareness?

**Disclaimer**  This is an opinion piece.  The opinions expressed are soley mine culled from my experience living with Rheumatoid Arthritis and Fibromyalgia. 

When asked why it is that we need to campaign for awareness, the answer is twofold.  The easy answer is that the research into causes, disease progression, treatments and (dare I say it?) cures is woefully underfunded.  Without awareness we will not get the funding that is so desperately needed. 

On the more personal front, from the front lines the lack of awareness does more damage to the patient than just the funding issues.  It damages us emotionally, it adds stress to our lives and diminishes the pain that we live with on a daily basis.  So what are the roadblocks that we run into in our road to awareness? 

  • What's in a name?  Rheumatoid Arthritis.  Let's be honest here.  The Rheumatoid gets lost and all anyone sees or hears is "Arthritis".  I did it when I was diagnosed.  My first thought when it came out of my Nurse Practitioner's mouth was "I am not old enough to have ARTHRITIS!" There's nothing catchy, nothing "sexy" about being associated with a very well known condition that our grandparents get.  The suggested alternatives are too...umbrella to me.  Rheumatic Disease?  Autoimmune Disease?  There are hundreds of both.  We need something that is unique to our situation.  I feel that that universal knee jerk reaction to is why our "celebrity" RA patients aren't vocal about their disease.  Who wants to be associated with something that is for "old people"?  These people are in a career that values youth.  Look at Kathleen Turner.  She allowed the tabloids to broadcast that she had substance abuse problems rather than coming out and saying that she was fighting RA.  While I shake my head at that thinking, I can also see why, when known as a sex symbol, she would not want to be associated with the word "Arthritis". 
  • The invisibility factor.  Until such time as we have had significant damage, you can't SEE Rheumatoid Arthritis.  I have been diagnosed for 5 years now.  Visibly, the only physical damage you can see is that my pinkies no longer straighten and two of my toes on each foot are turning out.  Who looks at that?  I see it because it is me and my own vanity but no one who meets me would notice unless I pointed it out.  I walk differently- I have a bit of a wobble these days and my balance is not fabulous, but again- just meeting me you would not know that it hasn't always been that way.  To my own detriment I only use my cane, or my braces when I have to do so.  Again with the vanity thing but also because I tend to power through anything tough in my life.  It's my own way to deal but even if I do use my mobility aids, people assume that I have been injured and I don't always have the time to give an adequate explaination. 
  • The judgement issue.  Judgement comes in many, many forms.  My husband and I have handicap plates on our vehicles because of my RA.  Grocery shopping- which I love- can be very tiring and often makes my hips feel like hot pokers are being stabbed into them.  When I am shopping, I use the cart to maintain my balance and to lean on as needed but no one can see the pain that I am in, because of this I have been on the receiving end of a multitude of filthy looks and snide remarks for having the nerve to use my plate for handicap parking.  At first it bothered me, but these days I just let it go.  I am not the only one who has dealt with this.  A lot of RA'ers report the same issue.  When it comes to work, there are days when I am ready to take on the world and days when just getting out of bed is a struggle.  When I have one of those days I try to be honest with my colleagues and let them know so that they can understand why I am doing tasks that involve sitting more than standing and so far it has worked for me. I am also fortunate (?) enough that my boss also has RA and therefore she completely understands.  A lot of RA'ers do not tell their employers about their condition because they do not want to be seen as "disabled" and that can lead to charges of malingering and brings on a whole host of issues as colleagues assume that you are being "lazy".   Taking days off when you are in the middle of a flare only adds to this because we "don't look sick". 
  • Health care ignorance.  I have been fortunate enough to find terrific doctors in my journey so I have not run into this personally but many folks with chronic pain report that they have been accused of seeking drugs or having their pain be all in their heads by health care providers.  How completely demoralizing must it be to have the people who are supposed to partner with you to care for you treat you in such a manner?  If your doctor (nurse, specialist etc) doesn't believe in you, why in the world would you publisize your disease?  I wonder if these doctors realize how far they are setting our awareness back through their unkind treatment of their patients?  I wonder if they care? 
These are the major points that I feel are roadblocks in raising awareness for Rheumatoid Arthritis.  My friend Kelly, the RAWarrior, has done a wonderful job of giving you well thought out research on our awareness issues- I hope that you will stop by her blog (linked in my title) and read the other side of this issue. 


Lana said...

There are two reasons to campaign in general, at least from my perspective: awareness and patient support. I think many people believe that patient advocates campaign for awareness only when it in fact, their role can be a support one as well. You actually have both of those for taking action. I think funding is lacking in both areas. While awareness for causes, disease progression, treatments, etc are the ones we strive for, patients are ignored – they are so many without health insurance living with the deliberating effects of RA and that really isn’t fair.

You are also absolutely right about ignorance and its role in the lack of action towards research. That ignorance leads to all the things you mentioned, lack of celebrity status, invisibility, judgment, and even health care ignorance. I think that that is a big thing with fibro more than RA, some doctors do not acknowledge fibromyalgia in the year 2010. Someone people still say that it is not real and that patients are mentally unstable expect they forgot mention that fibro patients can hold down jobs, take care of their families, and live lives just like anyone else – the difference is that that do it in pain.

As bloggers, we can speak up, talk about how the diseases have affected our lives, and how we have managed to make great strides and with better treatment options, our lives could be even better – at close to normal.

Rheu'mom'toid said...

Yes, we are in a tricky place. It is easier to just tell the world "I'm fine" and put on a happy face because there is no way they will ever understand the pain and frustration we experience. That is why I love my blogging friends. They remind me that I am not alone and there are people out there who DO know and understand. Thanks!

Tammy said...

hmmm it causes me to ponder but in the end, I'll speak my mind in hopes of educating one person. Life is not rosey most days, physically for me, and I usually blog about my day or a part or moment within it. Some bloggers have turned away and accuse me of being whiney or broken in spirit. What hogwash that is eh? NO I'm just talking about this minute in this day.

I think the lack of REAL TIME education. You know start with, "you think life's a bitch... try RA". Now that is something.

I think awareness is lacking and support is non existent!! few get it and those who do, want you to "think positive" like it will work magic somehow.

I have a fairly positive attitude and I hurt like living hell. I vent but I joke too. I am a sponge with research and I'm mentally exhausted. WOW.. what a conundrum. If it confused us, imagine it how daft those who don't have it feel when it's put across in a medical context.

Oy.... i'm on a tangent... sorry. Hugs. Tammy

Lauren Elyse said...

What a beautiful post. I've been told my illness is all in my head. I've been called drug seeking. I've had employers find my absences questionable.

I am so lucky now to have found the right doctor and the right workplace which not only understands Autoimmune but actually CARES. This is the place that actually sees my invisible illness.

Let's keep fighting. Let's be the voices for change. We can do this.

Jodi Whisenhunt said...

Jules, great post! I can relate to so much of what you said. Kelly has asked the question at RAWarrior about why people hide their RA. I think your vanity paragraph answers that pretty well. We don't like to think of ourselves as disabled (I don't anyway!). I also don't like to be reminded of what potentially devastating effects are in my future, and when I admit to my disabilities, I am forced to face those scary things. It does work against us, though, as you said, because then others look at us and wonder what's really going on. I think this awareness movement is going to mean some internal awareness for many patients before they are bold enough to let their voices be heard. Thanks for being so bold, Jules!

Anonymous said...

This valuable opinion

Leslie (Mombeenthere) said...

I never really know what to say to someone when they casually ask me how I am? Do they want the brutally cold answer? or the polite casual (repetitive) one? I know my coworkers were getting tired of day after day hearing the honest answer but still feeling compassion for me. I eventually retired on medical disability for my benefit, their benefit and that of my patients. I have never felt more cut off from the rest of the world than I do now. I had to give up driving due to the extreme fatigue and chronic pain meds. There is no real public transportation in our suburban area so getting out has to rely on bicycle or walking (both difficult) or good friends who don't mind driving me around. RA is not a fair ordeal to have to live through I want to work, participate in my children's activities and do things for myself and others but I can't this disease has robbed me of the ability to make choices about these actities and others. I didn't do anything to deserve this and it hurts physically, mentally and socially. I don't even want to think of what is going to happen down the road, this is going to be a frustrating, scary journey. Thank goodness my husband is there for me and does his best to understand my pain and frustration.