Rheumatoid Arthritis (or a type of inflammatory arthritis) - Facts, fiction and general comment.
I've been writing this note for a little while, mainly because of the various posts and discussions I've either had or seen online to do with Rheumatoid arthritis (although much of this can be applied to all types of inflammatory arthritis).
So many of us seem to have many similar problems, not just with people around us, but in some instances with people who are supposedly medically qualified, and yet have either shown complete lack of knowledge, or arrogance, or in the worst cases - both!
Will this note make any difference? I have no idea, but it's helped me just to write it down, and if I can just educate one person who didn't understand this disease - then I'll be happy. It might also come in useful in the future if I'm trying to explain to people what my disease means.
So - here are a few things I want to write about on facts versus fiction.
1) Fiction
Someone asks "What's wrong with you?"
"I've got Rheumatoid arthritis." is the reply.
"Oh, I've got arthritis in *insert some part of the body like hands/knees here* as well. I know how it feels."
Fact.
Well, actually most people are mixing Osteoarthritis up with RA.
I honestly think this is one of the most common things people with inflammatory arthritis face. If we all had a pound every time we heard this comment, we'd be rich! Now, I admit, I didn't fully understand the full problems someone has with RA until I was diagnosed with it - but I knew someone who had RA for years, and I also knew they faced far more difficulty than Osteoarthritis presented me (I also have some OA). Yes, Osteoarthritis can be painful, yes, in some instances it can be debilitating.... I'm not saying it isn't at all. But what I am trying to explain, is that compared to RA, it is no where near on the scale of problems faced. This is not an exaggeration....... because my OA often doesn't cause me anything like the problems I get with the RA. They are very different in the way they attack my body (and I can tell you, the pain levels are also completely different).
RA is also much, much more than wear and tear on the joints. It can attack organs (inc. heart, the brain and the lungs), as well as bone joints and bone density.
I think the worst time I heard this was a nurse at the hospital, who asked me what I had - and then proceeded to tell me she had arthritis as well, and went on about OA in her hands. I tried to explain that RA and OA are completely different, but she just seemed to ignore it and carried on about her hands. I walked out of there, knowing if people with medical training are getting these things mixed up - then its no wonder a lot of other people are.
I'm lucky - my GP, specialist and all the nurses I see do seem to understand the problem...... it was just one nurse who didn't - But for me, it's one nurse too many. *I also have the greatest of respect for anyone in the nursing profession, since we have family who are nurses before anyone thinks I'm having a pop at them or their training - I'm not*.
Rheumatoid Arthritis is an auto immune disease, not wear and tear.
2) Fiction
"But you don't have knarled joints like I've seen."
Fact
Partly due to drugs, and partly due to the way the disease can manifest itself, not everyone will have full signs of joint destruction. But don't be fooled...... as with many aspects of this disease, it doesn't mean the body isn't under constant attack and damage isn't being done. I first had x-rays 15 (yes, fifteen) years ago, that showed bone density changes. The specialist said I mostly likely have RA, (but didn't fully commit at that point) but at that stage, medicines were not as advanced as today, and he said the medication could do more harm than good.
Bone density change is invisible to the eye - and yet is one part of the disease process. Some of us are relatively lucky, and we don't have a lot of bone destruction - and by taking the medication I do, this helps slow it even further. It is never stopped, just slowed. Equally, my blood tests show how badly I have inflammation in my body, and while my RA factor is currently down because of my medication - it is still not even at the "highest" level of normal, but some 50% about that. This is a vast improvement because it was over 200% above normal at one point.
Just because someone doesn't "look sick" - it doesn't mean they aren't. This is something that really needs to be remembered.
3) Fiction.
"But your not old enough!"
Fact
There is juvenile arthritis. Because so many people mix up osteoarthritis with the other inflammatory types out there, because Osteoarthritis tends to hit people as they get older, they don't understand there are far more types out there than just wear and tear osteoarthritis.
I was told by my specialist, there are close to around 200 forms of arthritis. Some have specific names - others are grouped to a type, depending on the symptoms being shown. For example, some specialists will take something called sero-negative blood results (in other words, the inflammation factor isn't really showing), and still call it as Rheumatoid arthritis, while another one might just called it inflammatory arthritis - but generally both will be treated with RA drugs.
Juvenile Arthritis is a serious condition, and does exist. There are those of us who are also in our 20's, 30's and 40's when diagnosed. Age is not a factor.
4) Fiction
"By changing your diet/taking homoeopathic/doing exercise/alternative treatments - you can stop the arthritis."
Fact
While any good diet is important, as is moderate exercise, and always recommended - don't you think that if any of these "alternative" ideas of a cure worked, it would be something RA patients would be shouting from the rooftops at each other?
Again, don't get me wrong, in some instances, alternatives can help...... I've used acupuncture for example, and found it did help. Equally, in some instances, some supplements like cod liver oil have helped some people. But everyone is different and you will find what helps one person, will not help another. They are not cures - but something that might help ease the symptoms..... My specialist for example warned me off the "don't eat citrus" diet that was being touted at the time in helping arthritis. He said that studies had shown it had very limited effect, and it was more important to get the vitamins and/or minerals from the citrus than leaving it out.
Remember, we have been given advice from a whole team of medical experts - from the specialist's team (if your lucky, the specialist themselves), to the nursing staff, through to the physiotherapists and occupational therapists, as well as our own GP's. They all input with what helps, and in some instances, what could do more damage. Many of us see the specialist nurses monthly, let alone the 6 monthly specialist appointments. We also tend to see the GP in amongst all this - I seem to spend more time in hospital or doctor waiting rooms that my own sitting room these days!
So remember - do you really think we'd be given this sort of attention if there wasn't a problem? This isn't something with an easy fix - I wish it was.
5) Fiction
I've already touched on this - "But you don't look sick."
Fact
This is because not every disease shows signs that it is there. This goes far beyond just RA....... and also, drug treatments are there to try and minimise the disease progress. RA drugs are pretty toxic...... one reason I have to get monthly blood tests. Again, they are drugs they don't just give out until they are sure no other option is helping. Several years on, and my medication is still being tweaked, but also upgraded to stronger ones as needed to just try and keep the disease at bay. I, for one, would rather not be taking any tablets at all - I used to hate taking anything for a headache - but the crippling effects I get without my medication scares me more. Remember, our disease is diagnosed by a list of symptoms. This is one reason I am writing this out, because I am so tired of people categorizing others for what they should look like, or feel like because they don't understand our disease.
Equally, a lot of us go around trying to maintain as "normal" a life as possible. Just because someone is smiling - it doesn't mean they aren't in pain. Many of us act as best we can - but for all the smiles you see, there are also the times when your crying in pain/frustration and at the loss of life we used to have. Many of us live a life of illusion, and very few people see the "real" side of what we deal with - including, according to recent studies - the medical professionals.
Many of us hate living up to other people’s expectations of what a healthy person should be, as much as we hate living up to other people’s expectations of what being sick is.
So remember - Just because you might see someone getting out at a parking space with a disabled badge, and they don't "look" disabled - it doesn't mean that they are at their limit of walking without a stick that day. On another day, you might well see them in a wheelchair because they are unable to cope - and you wouldn't even think twice about it then.
Finally, just some general thoughts of mine.
Rheumatoid, and other inflammatory arthritis diseases are complex and life changing. Even with the drugs I take, and all the occupational aides I use (remember, given only after a full assessment) - Each day is a challenge. I try not to show it, and only those very close to me ever get to see how badly this can affect me day to day.
I can't fully expect anyone who doesn't face the challenges this disease brings to understand it completely - it isn't why I've written all this. But the closest I can describe is - imagine the pain you feel when you've stubbed your big toe badly. Now, take that pain, and place it in just about every joint in the body (you'll be surprised how many joints the feet and hands alone have). Now you can get some indication of what I face day to day. This doesn't even allow for the flare ups (when joints flare with heat and swelling), let alone fatigue, and raised body temperature. A lot of analogues for RA is it's like having flu all the time. Unfortunately, a lot of people have never had genuine flu - so find it hard to even imagine that scenario.
The next time you hear someone mention arthritis that isn't simply osteoarthritis - please - remember some of this note, and don't write them off or think it isn't devastating in its own way. Please don't be among the people who judge, or give advice, or questioning stares because they don't understand a diagnosis. This is someone's life - I sincerely hope it is one you never have to encounter.
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