Okay. So I don't have a diagnosis yet. I see my RA on October 21st. But I believe I probably have RA or something related to my joint pain.
How do you handle the people who gently suggest you are a liar or hypochondriac? I've had a comment that keeps sticking with me......how come you could hike up that mountain a week ago with your friends but you can't make it around the block with me?
I can't tell you the guilty feelings I had.
Sorry that you seem to have joined our club. Since I have diagnosed I have people tell me that they would top their selves if they had this disease, lots of people who tell me that they have the same problem and that it has been cured by following a certain diet/exercise program (some people do find these useful, I wouldn't never discount someone else's journey, it just isn't for me), and people who say you don't look ill.
A few years ago I climbed halfway up Cat's Bell in Keswick and thought nothing of picking people up and putting them into the back of an ambulance. Now I have difficulty with a tray!
You just have to ignore the majority of the comments and concentrate on those who are worth educating. There is a wonderful page on the RA Guy website which breaks down this hateful disease into a page or two. Print it off and give to those who are worth it.
In a similar way avoid Dr Google, he hasn't a medical degree to his name and stick to the websites like the NRAS and Arthritis Research. Vent and rant on here when you need to, there are many that are further down the road and they generally help.
All the best.
Good advice that I will follow. Thanks.
Also Stewnamie you could find you have Palindromic RA....that is it comes & goes!
When I first started getting aches & pains, busy the time I got to my GP......all the pain & swelling had gone......eventually I got a referral to a rheumatologist & tests proved I wasn't imagining it!
So hang on in there.....although blood tests don't always tell the whole story they might point a Rheumy to a diagnosis .
Do hope it's not RA!
I hope it's not RA too. But many of the signs point to it. I have tested positive for ra but none of the other bloods tested positive. I saw a rheumy doctor 7 years ago and he sent me away.....and now here is am again.
It happens and it hurts my own daughter who is in her late 30s told my to stop playing the victim she has not come near in over three years now my son has been a tower of strength but he still doesn't understand my limitations I just think it time for me to self preservative my life let people think what they like they can have this condition willingly if I could swop places and be fit
I understand totally what you mean June, nobody truly understands but ourselves and other people who have it. My own mother said to me and I quote "I don't know why you need those medications, try a copper bracelet" 🙄 She's a qualified doctor and Rheumatologist you know 😂 But seriously, it hurt at the time but I let it go as the only one hurting is me...Much love to you all putting up with hurtful, ignorant comments X
Wow. That's tough coming from your mom. I don't like being looked at through doubting eyes. But I will get used to it.
Yep...bu that's what she's like and she won't change...more interested in material possessions than people! I was just like you when first diagnosed and you do develop a tougher shell but it still gets to you at times!! I really hope you don't have RA..Good Luck 🙂 X
Thanks. Me too. I.suspect I have RA and Sjorgens....I recognize.symptoms.from both. I remain optimistic and do hope I am indeed a liar lol.
I know what you mean. I would rather choose to be a lazy liar than have this dreaded disease. lol.
Hi Junebee - It took my husband coming with me to the ER a couple of times when I thought I broken something and it was "just" a flair. Their comment that I had such severe RA they couldn't tell if a bone was cracked or not, did a huge amount to get him in mind with how bad I really felt, regardless of how I "looked". People can be cold with this stuff.
Now, I just look at them and smile sympathetically and change the subject. As one of my best friends said "Their opinion is none of your concern. Just ignore them!" Don't let them hurt your feelings. You know what the truth is...
Sounds like you have a good friend there I will remember that thank you for sharing
Yes - She is pretty awesome and one of the most logical people I've ever met
Yup that is good advice. Nobody needs.to know my business.
Yup. It does sound and look like a fiction I suppose. Thank you for your thoughts. They help. I'm still trying to understand the disease myself. But I will try to elucidate to all who will listen!
I have to explain to people over and over again "This disease is unpredictable. It is really frustrating for me, my work and my friends never to know when I wake up in the morning how much I am going to be able to do that day"
I have had so many bouts of unexplained illness that I might have worn out the patience of those I work with.
Thanks Kay. You are better at adding links. These are what I am talking about. I gave one to my brother and another to my union rep.
Yeah, sound advice! I was diagnosed in march, guess I need to get my head arouns it dullt first before im feeling strong enough to tackle other people's issues surrounding my RA...baby steps, little baby steps! ((hugs)) M x
It does have a simalarity to many of us because you can't see it, it invisible but if they sit down and take a few moments to maybe read up on it and then pray to god that it's not them, I almost lost my family because of something like this and the remarks they said, I thought if that's the way they want to be, then screw you, family or not you deserve some respect, and the rest of us too lol. One way I found helped was getting a few leaflets and leave them where they can find them.
Good luck,
Philip
Firstly -we must remember that none of us have ever stood in another's shoes before. So how on earth can anyone know what you are dealing with? But equally how on earth can you know what anyone else is thinking about you or whether or not they might be in equal amounts of distress? When someone is mean or implies you are a hypochondriac or fraud it will almost certainly because they feel they have something similar or worse going on or have some personal huge issue that is their own problem, not yours! Pity them and "walk on by" for your own protection. You can't help them but they can hurt you.
Some of the worst examples of unkindness and bigotry I've experienced have come from others with related diseases ie "you can't have RA like I do because you can walk up that hill or go to yoga - I could never do that therefore you don't have it -or only have it mildly!" or "you can't have Sjogren's very badly if you can wear eye make up? - I certainly can't!".
There is no real hierarchy of suffering with long term conditions. Every disease has its spectrum. No one can feel your pain or know how severe your disease is just by looking at you.
But equally try to bear in mind that the person denigrating what you are presently going through (and uncertainty, in my experience, is truly the pits) may actually have omething similar themselves. You can no more know if they are or aren't than they do with you. Denial is a powerful and negative force!
It's all about being in control or being controlled. Like the kind of domestic abuse some suffer, but no one sees it until too late. Those of us with invisible diseases gradually knock ourselves about mentally so we don't know what is real or not real anymore. And some doctors and family members are unwittingly complicit in my experience.
And somehow we have to learn to take back the control - and this is the hardest thing of all and personally I feel it requires a diagnosis. Without a diagnosis we can't even begin our journey or get back behind the reigns. Although some people have had to somehow - and gosh I admire them so much for this!
The way I've learnt to cope now is by being very careful whom I tell about my autoimmunity - and this is just pure self preservation. I've given up trying to raise awareness or educate per se. Even my husband of many years has no real concept of my pain or fatigue. But I tell myself that he might have similar stuff going on but just have learned to stay in control better than I have. Who is to know - we all interpret pain and sensations uniquely.
Also I have learned the hard way that there is no guarantee that someone with an established/ diagnosed disease will be kinder for this. People are people - and those who are kind just are innately kind regardless of their state of health. Occasionally I tell some of my story to someone who appears healthy and well and they bowl me over with their kindness. Then I'll dig a bit and find they are going through their own private hell but are terrified that yet another GP will dismiss them or a friend will cease to be a friend. Or with other friends their pain is so constant and familiar that it's like breathing and there's no point in telling anyone about it. This pain could be a personal drama, bereavement or sciatica - anything. So nowadays I just assume that everyone is going through something similarly hard until I learn conclusively that they are not.
I hope this makes a kind of sense. You will feel so much more in control again once you have a diagnosis. This is the hardest part. Take care.
Please lose your guilt. I've had to deal with this to. I now refer to it as "emotional abuse" that these so called friend dishout. Your friends need to except you for who your are. If they can't, then it's time to find new ones.
If friends and family do not know what RA is, then ask them to google it. You do not have to keep explaining it to them. I've been down this road many times and now I just ask them "Do you know how rude that statement is?"
take care
Sue
I know that is true. And I don't want disfigured limbs just to make a point! I would.rather look healthy and be misunderstood for as long as I can.
My reply to that would be "so I guess you don't have any experience of how autoimmune conditions can fluctuate wildly from day to day, then".
I think their reply would be no!
I have been diagnosed and early days with my treatment. This is one of the hardest things I have found to deal with (apart from the pain of course)
One day I'm fine, walking, up and about, cleaning, working, meeting friends and whatever I fancy doing. Another day in the same week or even the next day I'm a cripple, can't walk, too tired to bother to do anything. I find that hard to deal with so how other must see me.
Good days I wonder if it was all a mistake, I don't really have RA. Bad days I'm reminded.
I had all my meds stopped by my rheumatologist as I was having side affects and my blood levels were low. 6wks after stopping I was flaring all over. Knee bad one day, good the next, jaw bad the next week, all good the next day.
This is a complicated disease that's for sure. I'm not sure there is much to do as regards people understanding except to try and gently educate. I'm slowly getting there with my husband.
Take care xx
I think it is all we can do. I guess it's a matter.of understanding developing overy time.
So discouraged. I know it will pass, but....feeling the need to vent a little.
What do I do? Advice please.
Remission 
Has anyone started on a new treatment regime during lockdown?
An update on not worrying after lunchtime
