This is only my opinion (most of it) so maybe we can have some discussion.
A good friend of mine here is a linguist and we discuss "words" a lot because in a strange way words are both of our "business" The impact and the understanding people have of our words. I know we have all struggled with people understanding "what we have"
We don't want to use "arthritis" but yesterday I did... I was helping out in my wifes quilt shop (it was a legal holiday) and an older lady from our church came in wanting her sewing machine serviced. I told her I'd go get one of the tech's as my arthritis was acting up... She said yeah I understand and rubbed he knuckle saying "yeah its getting to me too". I wanted to tell her in the worst way "I havr something different, something worse" but i didn't get the chance before she asked me "do you have zipper body yet?" Yeah she had "osteo" (old peoples arthritis like Aunt helen had) Sje also had two new knees, 3 hips (one wore out) both shoulders and was thinking about an elbow. "and don't get the Roto rooter honey, just get the thing replaced"
Then I remembered MOST people with PsA (statistically) with PsA have mild cases (80% have either symetric or asymetric which are considered mild by arthritis standards) Thjere are other forms of "arthrits" that are as painful or debilitating than the bad forms of PsA. There is no simple way to describe what we have or is there???
This is where my discussion with my linguist comes in. Take it for what its wiorth the more descriptive and specific a word is she said, the more often its misunderstood. To impart GREATER UNDERSATANDING we come up in our society with catch phrases one of the more popular at present is "satisfying user experience" When applied to tablet computer it means "this blame thing works" to an oil change it means everybody working there "was friendly" and so on a very phrase has a very specific meaning
So of course I asked her about "my disease" and started to laugh. She told me when i said "my motater wasn't motating today" she knew exactly what was going on. She has known me for 30 years and knew me well so didn't doubt what I had or how it effected me. However if someone else (coworker neighbor) she didn't know so well would tell her, " I've costochondritis right now and aenthesitis in my feet and am getting over a some uveitis (all things we face) her first impression would be WhAAAAAT?? I'm dealing with a hypochindriac (the medical folk use malingerer) and she says research substantiates it.
So I guess too much information results in "no" information....
"Psa can become a career or an inconvenience, but it is in Your life and up to You," as another friend of mine says (he has lost most of his gut and is so messed up/crippled up he looks like a troll) he figures some folks deserve an explanation because they will understand but most are so self absorbed they wouldn't understand....
What do you think........
nym said (in an other thread):
Oh, my - what a HUGE misunderstanding and confusion of medical ailments!!! It seems there isn't a clear way to describe our condition, no matter what words we use. I hope you're able to get it sorted out with family and friends soon!!!
I struggle with this every day. Arthritis is interpreted as something totally unlike what I live with and is often brushed off as something merely inconvenient or bothersome. Autoimmune .... conjures AIDS and other unrelated ailments. The combination of the two "autoimmune arthritis" just confuses people. And it's kind of awkward to say, "I have a debilitating non-communicable disease that's attacking every joint in my body, resulting in inflammation, pain, and joint damage."
What I say, which is not politically correct, is I have PsA which is psorasis wth RA. That mostly causes them not to ask any more questions. If I say just the word Arthritis, I get all type of quick fixes and opinions.
I too find if I just say arthritis than people ask why I don't get my joints replaced. I end up saying Rheumatoid Arthritis with a stress on the Rheumatoid part. If my conversation continues I then specify Psoriatic Arthritis like Phil Meckelson. People have seen his ads and they see me walking with a cane with my finger splints on and they get the idea. I have started taking my cane every where that doesn't have a shopping cart. I find if I don't need it going somewhere I usually do need on the way back to my car. It also helps when I am having a flare to stop and rest with it. And people for the most part seem to get it that I am not at the top of my game. Hope this helps.
I find it very hard to explain…the best thing I’ve heard is a collegue of mine , when I tried to explain the condition he said “So basically you’re up s*** creek and you may or may not have a paddle!” We laughed so much I cried, but it sort of explains it nicely but obviously can’t be used very often
Mostly in Aus, people don’t mistake autoimmune for AIDS, so I use autoimmune. I put that down the the fact that one of our longest running, most well known soaps had a character with MS , which is also an autoimmune disease.
If I have to explain it, that’s what I use - “you know how MS is an autoimmune disease that attacks the nerves - PsA is an autoimmune disease that attacks the joints”
People generally feel sorry for those with MS, so whilst they don’t necessarily get it, it kind of gives an impression that seems to work for some people.
I too have struggled with trying to explain to people what I have. Since I have a distant cousin and a family with Lupus I tell my family that its similar in that it is an autoimmune disease that affects the joints too. Its in the same family tree of diseases. Once I tell them that they sorta back off but occasionally I get well why dont you go see their Dr. or talk to them about what they did to get better. They dont understand that they are "well" bc their body went on remission. Im waiting on that. Its just hard to explain! Very frustrating. But Im happy we here know what we have and understand each other...what a relief! :)
I just say I have a disease. They sometimes take a step back at that comment. If I get really po,d I tell them "it's like RA only worse " My disease is such an inconvenience that is a fact. LOL
I know lamb! Just imagine trying to add Sjogren's Syndrome and Raynaud's Phenomenon while you're at it!
I had to go for a stress test due to severe chest pain, and the Cardiologist didn't even get it, he asked me if they were autoimmune. Now don't you think he had the time and resources to look them up, especially with a medical student in tow? Personally I would have googled it before seeing me, just for some street cred! I might as well have been talking to a two year old!
He did know that Psoriatic Arthritis was autoimmune, and said that up until recently, they never thought that these diseases could affect the heart, but now they are beginning to understand that it does.
So we have a new topic of conversation for the Rheumatologist next week, though I am pretty sure I know exactly what it is!
I'm to the point that I don't even want to talk about it anymore unless I'm on Ben's Friends or with the Doc. So what do you say?
"Malingering", since we're talking about words, is not the "medical term" for hypochondriac. Malingering is faking an illness or injury to get out of a duty or job. This is most often applied to military personnel. Just in case we're going to accuracy :-)
There you got it!!!!! The more you try and tell people the LESS they understand OR WORSE they get a little of it. Sjogren's Syndrome and Raynaud's Phenomenon can are extremely unpleasant secondary diseases of PsA (or other autoimmune disease) but to the public (where they also exist by themselves) its dry mouth and cold feet. (we joke about Sjogerns at our house as being a blessing because we can't cry about our real problems) They end up in the same class (they are not) as hearing from your friends arthrits, can be fixed by a change of diet and some magic gook -um-puckey from the health aisle.
No body is entitled to an explanation and believe it or not in this "me society" are we entitled to "understanding" The harder we try, often the worse it gets. The medical terms as said in the OP according to studies actually make it worse. Remebmer how we teach teach preschoolers to use their words (and feelings words)
How ever when you really need to get a point across I will give you the PsA version of a Nuclear Weapon:
As some of you know my wife and I are charged (and blessed) with raising a multiply handicapped granddaughter. After being truned down by the disability waiver administrator for some respite care on the weekends so we can go grocery shopping by ourselves or just veg out (even i need some down time) Meeting with the supervisor for an appeal she asked why we couldn't do that stuff while Tana was in school. I told her that if it wasn't for the fact we still had to work and my chronic illness , we probably could. She asked me WHAT ILLNESS (skeptical of course) As everyone knows I am meek mild, soft spoken an always hold back. This time was no exception....
I simply told her that I had an "genetic autoimmune disease". She said Ohhhh.... Knowing where she was going I said I'm sure you know there are two kinds of auto immune disease one like Magic Johnson has - HIV, that you acquire, which is an immune system that is underactive, and easily treated and kept under control with drugs that boost his immune system. Then there is the other kind like I have which which you are born with and is the exact opposite where the immune system is overactive and keeps attacking every part of our body. We have some drugs that slow the attack down, but so far that's the best we can hope for. The joints muscles and tendons are first then the organs......
So we got weekend respite care from Friday night to Sunday night, if we want (talk about a date night) We also have a morning aid to help get her showered, dressed through her chores an off to school, and an evening aid who helps with Tanas evening routine.......
I have just started a new job so have had a load of new people to tell. I just couldn't be bothered to go into the details, after all I don't want to be known as the new girl that's boring everyone with her list of ailments. I've just said I have something that is a cousin of RA but worse. That *seems* to have satisfied most peoples curiosity.
The linguistic side of things bugs me too. I am 30 and when I have tried to explain to people that, no, I can not do that because I have Psoriatic Arthritis they look at me funny like I'm not supposed to have arthritis so young. What makes it worse is I have the mutilens version of PsA so I have to be especially careful about what I can and cannot do to avoid flare ups. Luckily for me, I work with my brother-in-law who watches out for me, and the principal at the school I teach at has a wife with MS, so he is very sympathetic to the autoimmune life. I often have them jump right in before I even think about moving a desk or something similar.
It's not just with PsA though either. I automatically think of Autism and the huge variation within that diagnosis with respects to students I've taught. Everything from functioning at the level of an infant to high functioning forms where you can only tell they have autism when you see them interact with their peers. I find that when I talk to other teachers they understand the variation, but when you hear random people from the public talk, they assume people with autism have exactly the same symptoms.
I also have PTSD as a result of extensive and severe childhood trauma. Try explaining that one when you've never been in the military. People seem to think that diagnosis is only for people who've served overseas.... and because I developed it while my brain was developing, I will have it for life, so then I also have to deal with people who think I just have to think a different way about things to "fix" myself. Oi.
I was trying to tell someone today about my increased susceptibility to infections, virus or bacterial, and that it can get bad quickly. She asked if it was similar to having no spleen. Is this kind of accurate regarding susceptibility?
Michelle - I usually just say ‘yes’ to a q like that haha. True or not they are trying to find common ground so I like to help them along rather than go for accuracy. Lamb - I tried ‘rare, genetic disease that keeps me in and out of the hospital’ the other day - WOW it was the bomb, thx! - I thought the guy was gonna buy me chocolates on the spot. Oh here is one that usually gets a laugh or at least a smile - ‘my immune system keeps attacking my internal organs for no good reason, but that’s ok bc I don’t need most of them anyways’
MMMm most intersesting thread. I am very curious about the power of language - both as a descriptive tool and a mode for social interaction but what truly fascinates me, as a self obsessed creature sometimes - is its power to train us to think in ready made conceots. They can imprison our thinking/feeling as well as empower us. I for one am truly concerned about how we label ourselves. In education circles once we were taught about the negative effects of labelling pupils. In states where we feel less than optimal I believe the language of disease can be imprisoning. To say i have Psa for example can leads unconsciously to the assumption we are powerless to change this diagnosis. it plays beautifully into the hands of those we deem to be more knowledgeable than ourselves, for example , doctors and those wonderful pharmaceutical companies. I am sceptical about this. If it is possible to change disease states, which I believe it is through my own experience, then we need to be critical of our self labelling. I want to look on the past 20 years when I handed over responsibility of my body to those who less of an investment in it than me as a learning experience. I am a lot more assertive and responsible now, and I am just fair to middling thanks!
Lara, I too have PTSD, though mostly under control due to great therapy for the past decade. Still have flare ups occasionally (like this past week, ugh). Mine is due to medical trauma over many years when I was a kid. People don't understand that it's not just veterans.
When I explain my disease I either explain I have RA (which some people understand, and the symptoms are pretty much the same), or if they are the completely clueless type, I say I have a degenerative autoimmune condition. Then people either back off or ask more questions. Either is fine with me.
I don’t ever mention my diagnosis of PTSD its just too much effort to get people to understand…as you say the general public perception is that is a condition suffered by people in combat zones. I also find that anything concerning mental conditions is akin to telling people you are a vampire! You can nearly see some people back away in horror lol
I had luck with "I have Autoimmune Arthritis - my body is attacking my joints, connective tissues and internal organs" in the past couple weeks. All the responses have included how I must be in pain, exhausted, etc. to questioning how I can even function, nevermind taking care of five kids. People tend to have a basic understanding of what autoimmune is, and what arthritis is, and by expanding their understanding to include connective tissues and internal organs, they seem to understand it better.
