What's wrong with you then?

firestar

Hi Everyone
I am still adjusting to having inflammatory arthritis but really struggling with how to explain the problem to other people.
I jump around various labels such as inflammatory arthritis to seronegative spondyloarthropathy or psoriatic arthritis. So just wondering how the rest of you (non-rheumatoid arthritis people) explain it in a 'quick' sentence or two. As I get carried away and once I get going I start sounding like a text book and I can see the recipient's face glazing over! :-O
Thank you

Boomer13

Hi firestar;

I don't get along very well with describing this. I usually say I have inflammatory arthritis and when I get a blank look back, I say it's like rheumatoid arthritis because most people have heard of that. I have PsA.

Then, I leave it at that. I've given up trying to explain what it is because most people reply with "well, you still look healthy". At this, I through my hands in the air. Most people find it very hard to relate to someone who has a chronic, illness that is not well known.

Sorry, not to be able to give you a better answer than that. I've given up.
Anna

As5567

I just simply dont tell anyone unless they specifically ask, and then I only tell them I have as and for them to look it up if they want to understand it better. I feel that when I have told people in the passed it has done nothing but brought on annoying comments such as "oh so you're better now"

I dont think many people will ever understand what arthritis is or how many types there are etc, people just assume its an old age disease and is the same in every person.

stickywicket

I guess the thing is, people ask out of politeness and rarely want a long answer let alone one with long, medical words too In your case I'd say I had a form of arthritis similar to RA. If they want more they'll ask and then you play it by ear as to how interested they really are. Be thankful for the real friends who genuinely do want to know. As for the rest, just give them what they want and forget about the rest.

merri

I agree with stickywicket, I think that's a good way to approach it

firestar

Yes it does seem a bit tricky.

I agree that most people just what the 'I am ok' polite response.
And definitely experienced the 'but you look well' and 'you'll be back to normal soon then'.

I think it is hard trying to educate close family and friends on what it is. My husband asked me the other day 'so what do I tell people is wrong with you?'. So I realised if I hadn't even made it clear to him and I am going to have to try another approach!

Before getting diagnosed I had not heard of most of the different types and read something saying there are over 200 types of inflammatory arthritis- no wonder it feels confusing!

It does sadden me that many people I know are not really interested and don't really want to know and that is why this forum is really helpful- knowing people get it. And knowing that the label doesn't really do justice to the felt experience.

Thanks for the comments and helping things get clearer in my mind
:-)

Mat48

Well for Scotland a survey revealed that only 10% of people know what RA is let alone other less prevalent types of spondyloarthritis such as PsA and AS. I find that some people wake up a bit if I say that it's an autoimmune disease - they seem to get the word autoimmune more easily than inflammatory somehow? If we all try and spread awareness in our own unique ways I believe it does help. I got quite sad last year when I heard items on our local radio station about Diabetes, falls, Crohn's and regular slots about cancer and heart disease but never about arthritis. So I contacted the local branch of AC to to see if they would put something on during World Arthritis day but they weren't interested. So I got in touch with the radio presenter myself, who told me that he has family members with RA and he agreed to try and run a piece about inflammatory arthritis. But unfortunately I was away the week that world arthritis day took place so couldn't prompt them this year.

I did go and see my MP about it last week as a Scottish ambassador for NRAS. He had no idea what RA was or how it differed to other types of arthritis but I think explaining that it inflammatory autoimmune disease that affects people of all ages did help. People find it easier to grasp if they can relate it to themselves too. This isn't selfishness really its just human nature. We will see!

Kittkat

I just say I have a skin condition (psoriasis ) and a joint problem that makes me tired and achey. I don't like to go into it as I don't want sympathy from people and also I know they more than likely won't understand. To my friends I will just call it my health problems. I don't want to go into the 'but arthritis is for old people thing'.

dreamdaisy

I say to people that I have two kinds of arthritis plus fibromyalgia and that it's a very dull topic. Then we talk about them (which is always more interesting for one of us. ) In response to the 'You look well' I say 'Thank you, that's lovely to know.' DD

mig

I've only had this arthritis lark for 4 years but I know the rolling eye look ,so if anyone ask me how I'm doing I say ok thank-you how are you. Mig

villier

Me too mig that's all I say.

Kittkat

It is the best way most of the time mig

Starburst

I always reply "I'm fine thank you and you?" when people ask. I find that most people usually are just asking to be polite. I just about tolerate telling my parents how I am really. I'm not good with talking about it in real life to friends or most of my family. My theory is; it's dull as ditch water to live with, so why would I want to talk about it?

Starburst

In answer to the original question, I have an array of answers, depending on how I'm feeling. I am going through a stage of being fed up of "arthritis? my granny had that in their knee and cured it with fly fart oil!" so I usually tell people I have a joint condition. Sometimes nosey people inquire further and I say my immune system attacks my joints or an autoimmune joint condition or an inflammatory condition. I hate the connotations of arthritis for a youngish person like me. I know some people aren't fussed but I get rather fed up of it.

suzygirl

Starburst, I have to agree with you, its boring to live with so why would I want to talk about? I also say I am fine thank you.

However going slightly off topic, what REALLY gets me, is when I have been polite enough to say I am fine, then the other person then proceeds to bore me to death with their ingrowing toenail or runny nose etc :x

Mat48

I'm fifty and I still feel a bit like you do about the term arthritis Sophie. I feel this way on your generation's behalf mostly because it must be pretty isolating being told you are too young to have arthritis. But the thing that gets to me more is that RA and other inflammatory arthritis diseases come under the heading of Muscoskellital rather than Autoimmune in government and policy making circles? I sat through a meeting recently where all the talk was of cross-party committee for muscoskellital (sp?) conditions - what a mouthful? I mean how can we hope to convey what these diseases do to people when I can hardly even write or pronounce this umbrella term? I said this to my rheumy once recently and he agreed wholeheartedly and said it was true I do have much in common with a person with Crohns or Lupus because they are also systemic autoimmune diseases and the drugs we take overlap as well as some of the symptoms.

So I'm all for just saying briefly that I have an autoimmune condition that affects the joints and other parts of me - if I say anything at all that is. I also hope this will explain why I currently have some large bite like spots on my face too without them thinking me infectious! X

dreamdaisy

Hello Suzy, I reckon you are spot on because there is nowt worse than a healthy person boring on with their comparatively trivial concerns; as I said, at least one person is interested in the conversation. Mind you, I think that happens in all walks of life, it seems to be a case of 'Let's talk about me because I am fascinating!' My response is usually 'And you think that because . . . . ? DD

dreamdaisy

What I should have said was my 'thought response is' - of course I don't say it to their face! DD

bubbadog

Whenever I get that question I smile politely and say 'I have Osteoporosis and Rheumatoid Arthritis'. And I always get the Answer ' Aren't you to young to have that' and I answer back 'Well thank you, but you can have Osteoporosis from Childhood upwards.' And that is usually enough for them!

Mat48

If we don't communicate about our various conditions we can't blame people for assuming they aren't serious. So I feel that finding a brisk but effective description of your condition is important rather than just keeping schtum and sighing privately. Mat

dreamdaisy

It's more a matter of a split-second decision whilst trying to gauge the actual level of interest. There is nothing worse than a health bore, I remember in my early days trying to explain it to people but I soon learned to watch out for the eyes glazing over, frankly I can bore myself with it all. Friends from the past seventeen years, who have witnessed my steady decline, ask if my knee is still hurting. That's the only bit they remember, mind you it was quite a sight. DD

PS It must be far harder for the parents on the 'My Child has Arthritis' board on here, how do they explain that their 3 year old has inflammatory arthritis? I think the youngest one I came across on there was 18 momths old.

Mat48

Yes terribly hard for them I agree.

firestar

Wow thanks for the lively discussion :-D
I think on most cases the 'I am fine' response is best but I was struggling more with people who are closer friends.
I like the overview phrase of 'I have a joint problem which causes pain and makes me tired'. Maybe mention the auto immune bit?
I guess the phrase doesn't feel like it does justice to the felt experience of feeling so rubbish but I guess I'll get over that as I get more accepting of that is the way it is.
I guess I am also worrying about trying to explain it well so when I have to choose not to meet friends or doing something that aggravates the condition they don't think I am just not bothering. Very hard balance and I am causing problems by trying to keep friends happy but causing more pain-again time hopefully will train me to pace better!

Thank you all for your comments.

dreamdaisy

Pacing is the ultimate skill and a tough one to learn. The healthy have little comprehension of the struggles we can face, the fact that sitting in a restaurant for a few hours can wipe us out whilst they are all up for going on to somewhere else! One day they'll discover that that cannot always be done . . . . . . . DD

suzygirl

If people genuinely are interested or you want them to understand then I do explain a little. I have SLE and Sjorgens so say my immune system has gone into overdrive and doesn't just attack germs it attacks joints etc etc. Or it is like having really bad proper flu every day and still having to get on with it, fever, aches, sweats, chills etc That usually suffices to give a small understanding.

However close friends have seen my ups and downs, and how I slowly grind to a halt when tired and or flaring. I found it hard at first to let people in and I pushed everyone away for quite some time. We all adapt differently.

I am all for awareness of these illnesses but I prefer to do it such in a way that I am reaching those interested and seeking info, rather than shoving it in peoples faces when they aren't interested or don't care.

Very interesting discussion.

P.s DD my inward response to listening to boring peoples minute health trivia is to rant inside about how I was polite, and why can't they take the hint!! :roll: Mind you when I see my gp and apologise for bothering them, she laughs and says I am the first genuinely sick person she has seen all morning!!!

Mat48

I agree about not shoving it in people's faces - never a good way to keep friends or make new ones really :roll: But equally if people are intrigued, as sometimes they are, then I explain it as an autoimmune disease that attacks the joints and sometimes other parts too. I find it quite easy to judge people's interest or tolerance levels usually and have had enough health sermons from others to know that I don't want to do the same to anyone else But the thing is that if people are interested then it's often because they want to know what the symptoms are in case they or those they love ever have "the signs". And bearing the short window of opportunity regarding early diagnosis it can be educational to explain it to people too. Mat x