A really interesting question was raised in a forum this evening (thanks Lisa). One of those moments when you’re pretty sure you disagree with a point that’s been very well made but you have to stop and think, why?!
I’ve been struggling a little with ‘bloggers block’ recently so I’m actually doubly grateful to the lady who set my writing brain in motion.
In essence she asked if, in today’s society, we as RA patients have become narcissistic and lazy. Looking back at her grandmothers’ with RA who farmed, harvested crops, made canned goods and ran a family with time for everyone to feel loved and no complaints, she feels that we perhaps focus more on what’s wrong instead of counting our blessings.
“Sometimes I think my grandmothers with their knarled little hands dealt better…. … and continued to live and love life”
So do we dwell too much on our conditions? On the face of it a not unreasonable question, but then I applied it to myself and my instinctive response was an immediate no. So now I have to process why… Or work out if I’m just self delusional!
I think we are comparing apples and oranges. Our grandmothers lived in a very different world. Mine was born in 1905, well over a hundred years ago. Home electricity would not become commonplace for another 25 years. Women having equal voting rights was still 23 years away and there were another 43 years before the National Health Service was created. Your choices for medical care in the UK were private for the rich, or relied on charity for the poor.
I’m going to digress a little here, please stick with me. In 1914 Rheumatoid Arthritis was believed to be caused by Tuberculosis. Intravenous Gold Therapy was used with RA patients simply because it worked for TB. A clinical study in France in 1932 proved that, accident or not, it had therapeutic value. In 1948 after years of research with biochemist Edward Kendall, Dr Hench of the Mayo Clinic in Minnesota tried Cortisone on an RA patient for the first time. He and Kendall were awarded the Nobel prize for this breakthrough in 1950.
But still clinical treatment was for damage after the fact. Not until the 1980’s was Methotrexate, the first DMARD (Disease Modifying Anti Rheumatic Drug) introduced. In the later 1980’s research was making breakthroughs, the TNF (Tumor Necrosis Factor) was discovered and new treatments started to be developed, leading us towards the biologic options we have today.
Fascinating stuff right? But it has a point. My theoretical grandma with RA would have been 45 in 1950. It’s fairly common for people to be diagnosed at around this age. Her only option for treatment was cortisone. There was no way to stop the crippling damage. Fast forward another 30 years to her 80th birthday in 1985 and maybe, just maybe, she would have been offered Methotrexate for her final years. But much too little way too late.
So let’s think about her options as this debilitating and crippling disease with its pain and fatigue took over her body. Societal norm was to keep medical matters private. You didn’t mention things to your family, let alone friends. You put up and you shut up. So, feeling alone in her pain she carried on. There was no other option, cooking for the family, looking after the grandchildren as they came, washing and cleaning daily because it was women’s work. Who else would do it?
I was born in 1970, and I was diagnosed at 45. But my life is very different. I have washing machines, computers, newer medicines and diagnostic tools, the Internet and rigorously trained doctors with a wider knowledge of RA. I don’t have family next door and children to look after, but I’ve had to work all my adult life until my disability made that impossible.
But you know what I think is most important, in some ways way even more so than the newer drugs and research? I don’t have to suffer alone or in silence. I can reach out to my friends and family for help, they know what’s wrong because it’s OK to discuss health issues openly. I can reach out through forums and blogs and twitter and share experiences and knowledge and pain and frustration as well as the joy with the online RA community. I’ve both received and given support, and I’m grateful for the opportunity to do both.
So do I think I’m narcissistic or lazy? Do I think our Grandmothers were somehow stronger? No and no. We are a product of our upbringing and the society we live in and, thankfully in this case the rules have changed. And I definitely think that’s for the better.
With reference and thanks to ‘The Rheumatogist’ article A Short History Of Rheumatoid Arthritis Therapeutics by Simon M Helfgott MD for some of the historical information included here, any errors are wholly mine.
singlerheum 
I LOVE your thoughts on this. I was diagnosed with RA last May (2015). My dad (I just recently found out) was diagnosed with JIRA at age 17 in 1970. He still has RA, but refuses to acknowledge it because his prognosis at the time of diagnosis was a wheelchair within a few years – so he powered through the pain and stiffness and so, in his point of view, defeated the illness. He’s still a very, very active person and moves non-stop throughout each day. As soon as he sits down to rest, he falls asleep, probably from the fatigue of RA (and his other autoimmune disorders). He’s on medication for sarcoidosis (prednisone) and a heart issue (probably also stemming from RA).
My thoughts
1) Activity definitely helps with keeping joints flexible, even if range of motion is compromised. Society has changed significantly since computers have become household items and just about everyone spends their days sitting down in front of a screen. (My dad has never had a desk job and can not keep still for more than a few minutes.)
2) Diet has changed. In the last 50 years, our diet (I’m in America, so maybe a bit different from where you are, but maybe still similar?) has become heavily reliant on processed foods and refined carbohydrates, both of which have been shown to increase inflammation and the pain it causes – which is exacerbated in RA patients.
3) –> Diet and activity level changes over the years, taken together, have changed the effects of RA. I think we suffer more now than our predecessors did, not just because we’ve become used to a certain level of quality of life, but because our quality of life has made health harder to achieve, especially if we have this disease.
Since figuring out how my dad has “beat” RA, I’ve been making efforts to be more active every day and really rein in my diet (I’ve been gluten free for years, but corn and rice and caffeine are really difficult for me to completely avoid). It’s helping a lot, and I really can’t say enough about it.
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(Continuing my thoughts) (sorry I’m a chatterbox today):
It’s kind of like we (current RA patients) are sicker, not just because we’re able to admit that we’re sick and we want help with it, but also because we (everyone, including RA patients but not exclusive to RA patients) are really not as healthy as our grandparents were.
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Thanks for your thoughtful comments. I’m afraid whilst I understand the thinking behind diet changes, I’ve not yet seen anything to convince me. I know a number of people who’ve had RA for over 20 years, they’ve tried every diet going with no impact on their disease activity. My two rheumatologists have both told me that whilst eating healthily is good, there is no scientific evidence diet and RA are linked, and actually excluding food groups without tested allergy reasons can be unhealthy. We’ll have to agree to differ on that ☺
As for general health? Our predecessors in the 20th century had far worse general health than we did. The 1918 flu pandemic for example is thought to have killed up to 50 million people, or 3% of the world’s population at the time. Even as recently as the 1950’s Tuberculosis was the biggest killer in Europe. Until the relatively recent improvements in sanitation and medicine many people died young, and most at home.
Life expectancy for a woman in 1901 was 49. In 1930 it was 55. 1950? 66. It wasn’t until 1980 women’s life expectancy increased to over 70 years.
I honestly think it’s just that less people were diagnosed, and less was made of it. Death was more commonplace. Infant mortality was high – in 1911 50% of children between 5 and 9 years old died from infectious diseases. Half. That’s both sad, and incredibly hard to imagine now.
With your parents dying in their 50s and possibly half your children not surviving to teenage years, I would imagine that having aching joints and fatigue, as hard as it is, was simply not worth mentioning.
When you factor in that Rheumatoid Arthritis has an estimated prevalence of 1 to 2%. But this increases with age, approaching 5% in women over age 55, you can see that simply less people lived long enough to either be diagnosed or suffer years of long term damage.
I hope that makes sense? I want to say thank you, as you prompted a brief but very interesting journey through historic health here!
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