Date: 29.05.2011
From: mads
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Subject: the name
i think that having arthritis included in our conditions (RA and PA) is not helpful when trying to highlight the problems these autoimmune disease causes. The vast majority of non medical people whom i speak to about my condition confuse it with general arthritis. i wish it were called something else.
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Date: 29.05.2011
From: Lee
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Subject: Re: the name
I went to York hospital recently and I said I had PA and she kept referring it as RA which really annoyed me. It's different hence why its not called RA but the Dr there just didnt seem to understand why I kept saying PA and correcting her. Just because the last part is the same it seems some Drs automatically class it as RA
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Date: 30.05.2011
From: x kerry x
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Subject: Re: the name
i got a report sent from my last apt with the obs med dr (im pregnant, so aswell as seeing my rhumy and midwife i see a dr that deals with women who have other serious medical issues whilst pregnant) and all the way through the report he refers to me as having 'sciatic arthritis' thats not even a thing!! I have sciatica, and psoriatic arthritis....these are the people im meant to be trusting with my health, and they cant even remember what it is thats wrong with me!
People do tend to lump all types of arthritis together. I find myself constantly having to explain i have an auto-immune disease, not just poorley joints. My best friend is forever giving me advice, as her dad has osteo arthritis, and she keeps saying it helps to exercise the bad joints....i dont have oa....i have pa...and hyper mobility syndrome, forcing my joints to move when theyre bad only makes them worse! She doesnt understand that when im ill, im really ill, its more than just being a bit stiff, its throwing up, head aches, tiredness, chest infections, throat infections...you name it, the pa causes it. I catch anything that goes round because of my shitty immune system...but her dad gets a stiff knee, puts a support on and walks it off. I wish it was that simple for me, or that i could even walk at all on bad days! People just dont get why the arthritis is there, they just think we have a bit of joint damage, but dont get the under lying causes! X
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Date: 30.05.2011
From: cookie
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Subject: Re: the name
I think i will rename mine as rheumatoid canteffingmovemostdaysitis lol
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Date: 30.05.2011
From: tinkpink1
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Subject: Re: the name
I agree... people just think that you have poorly joints like an old lady.. but ISNT it is due to my immune system going bananas! But if you say its an auto-immune disease people just look at you blankly.
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Date: 30.05.2011
From: Lee
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Subject: Re: the name
I can understand uneducated everyday people getting confused as untill I was diagnoses I knew very little and probably didnt realise so many different versions. However medical staff at dr's surgeries and hospitals have no excuses for not saying the right disease
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Date: 30.05.2011
From: Francesca
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Subject: Re: the name
I can relate to what you are all saying. I have friends who work in the NHS but in psychology and they all tell me to keep active blah blah, not easy when your joints are inflammed with PsA and to move them will cause more damage. I have osteoarthritic knees thanks to ignoring my disease and continuing to carry on like I am the fittest of the fit. It is frustrating and it is no ones fault. All we can do is patiently explain what is wrong with us.
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Date: 30.05.2011
From: Dilizjo
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Subject: Re: the name
Hi
Cookie I think the name change is great I will also adopt that one :)
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Date: 30.05.2011
From: mads
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Subject: Re: the name
i like cookies name too - wonder if the medical profession would adopt it. I did a bit of googling after i posted my message and found that we are not alone and i signed a petition (i think it was from the US) seeking a name change of the RA condition.
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Date: 30.05.2011
From: Lee
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Subject: Re: the name
Im off to the Dr's tomorrow I might use it and see if they notice lol Great name
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