I'm 28 and was diagnosed with RA in my hands, wrists, knees, ankles and feet 5 months ago, my life has changed completely. I can't do much of which I took for granted before and have to rely on other people to help me do the simplest of things, like fastening my bra or opening a bottle.
I am sick of being told "you're too young to have that". I know I'm young, but that doesn't help. It's like people don't understand, they just judge the outward appearance and have no idea what I am going through or how much pain I am in.
Has anyone else had the same experience?
P.S. Sorry for the rant!
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Technicoloured
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It did, thank God, the DWP were sending me to different doctors and they realised after the private dr diagnosed me with fibromyalgia, so then they had to give me some benefits, lol and they turned stupid again so my battled on and eventually got my money back lol, now a days things are ok with my GP and they still listen lol, god help me, when my Dementia catches up with they probably won't believe me anymore anyway lol.
Happy fighting and I hope one day soon they won't look at your age lol, how are old are you if you don't mind too much.
Rant away Tecnicoloured! We all need a safety valve from time to time and where better than here? Its rotten for you to get this foul disease so young and I feel for you. I've never been told I'm too young for this 'cos I'm not young, at least on the outside. Several people have mentioned badges and bumper stickers saying "no I don't look Ill, but you don't look stupid" which makes me giggle. They can't help it, you know. Most people haven't heard of RA and assume "arthritis" is just sore joints on old people. Aren't they lucky? Apart from very close friends and family I don't bother to try to explain. Most don't get it and I refuse to be defined by it. Wishing you better. Hugs
I definitely need one of those bumper stickers! It's so annoying, there should be more awareness that RA isn't just arthritis and it can affect any age and isn't merely 'sore joints'. I've stopped trying to justify my illness to people now, I just nod and smile at whatever they say now, not even worth the effort of explaining - they won't understand anyway.
On the whole I'd rather try to explain colour to a visually impaired person or knit fog. You want fairisle or arran? I haven't the time, energy or patience for it
I think you will find most people with RDs are disbelieved when they try to explain how ill they can be.
For a start 99% of the population appear not to know the difference between RA & OA....both are horrid, but when you can actually see a damaged joint it seems people assume you were an athlete & are sorry you can't compete any more......Dah!
When I broke my arm recently I got more sympathy with my visible plaster caste than I have had in 18 years of RA......& it didn't really hurt that much!
Best thing is to smile benignly......& get on with living the best life you can manage!
It is a hard thing to comprehend, you won't ever know the extent of the illness until you've actually experienced it.
It seems that if people can see that something is wrong they are less likely to judge and less likely to think you are 'faking it', which is of course ridiculous that you have to prove something is wrong to be believed.
It's truly an invisible disease not helped by the arthritis connection with OA, the 'old people's condition'. Well, I wasn't as young as you, 20 years older in fact, but I certainly wasn't old when I was diagnosed with both RA & OA . Which brings me to what may help distinguish the two should anybody say either you're too young or you look fine, many of us & our Rheumy team call RA RD, Rheumatoid Disease. Since I've used it, not looking for sympathy by the way, you see people have that ah moment, that I didn't realise realisation!
Things will get easier, you'll find you can do more once you've found the right mix of meds. Unfortunately RD isn't a one size fits all disease so it may take a bit of mixing & matching but you'll get there.
Long may people say you look fine, even if you don't feel fine, because if you look fine from the outside the meds are working. 😊
Hi Technicoloured,
I am 29 and was diagnosed 8 years ago. I get the comments all the time, I think it doesn't help that I look about 18. 😳 You do learn to take the comments on the chin, smile and internally roll your eyes. 😉 The term "arthritis" also seems to make people suggest the most random and bizarre miracle cures. Again, I've learned to smile, say thank you and suggest I'll have a look when I get home. Inside, I am swearing a bit but nobody needs to know that!
Dealing with the diagnosis is hard enough without the comments that accompany them, so I have a bundle of empathy for you. You're not alone on here. We will always understand what you're going through and we're here to listen.
I look young too, so that doesn't help! I do a lot of the internal eye rolling and swearing on the inside, while smiling and nodding on the outside! 😂
I've had a tough time, it just all piled on at the same time. One day I thought I was healthy but went to the doctors because my hands hurt, next thing I know I'm being told I have RA, hypothyroidism, hypermobility and a problem with my heart all in on phone call with my doctor - it was a lot to take in all at once! 😫
At 6?! I can't even imagine that, I thought being diagnosed at 28 was bad enough. I have empathy for you, it's a tough thing to be diagnosed with. How have you coped with it from being diagnosed that young?
Unfortunately people only hear 'arthritis' and assume old people and osteoarthritis. I was diagnosed at 19 (I think I was lucky as it was the mid 80's). There is not enough understanding of RD in how it affects the joints and body. I tend to say I have inflammatory arthritis and this allows me to explain more in that my body attacks my joints. I am now 50 and had a knee replacement 2 years ago. It has been like being on a roller coaster at times. NRAS or Arthritis research have information on the disease and drugs. Farm
NRAS is trying hard to raise awareness that RA isn't an old-person's disease but there's still a long way to go! We've got a couple of things that might help - we have handy business cards that explain in 7 simple bullet points what RA is (useful for giving out to friends/family). nras.org.uk/publications/wh...
There's also lots of videos and stories on our YouTube channel which might help - sharing things like our #behindthesmile videos might help - youtube.com/user/NRASociety On this forum we've had quite a few users saying they just use just the word 'rheumatoid' or 'rheumatoid disease' as that draws people into a conversation about what RA is - rather than them just hearing the arthritis part.
We have also just introduced some new bumper stickers: nras.org.uk/shopOne says "I am what a person with an invisible illness looks like" and the other says "Not all disabilities are visible" - they were part of our RA awareness week packs and they've been so popular we've decided to keep selling them!
All small things but hopefully it will keep raising awareness of invisible illnesses like RA.
Yup, had the same experience! People don't understand something unless it's visible/in their face. I have/had a very physical job - which I can't physically manage any more, but for a while I used to wear a wrist splint to help me get through it as at that point my right wrist was the main issue. It helped folk to at least realise there was a problem or sorts but years later I'm still getting folk asking "is your wrist OK now"! They just don't get it - but why should they really if they haven't had any experience of it. I've stopped calling it RA and stick to 'Auto-immune condition' to attempt to avoid those "you're too young comments" which does seem to help a bit. I do hope the awareness programmes start to filter through, but I think it will be a long slow, never-ending progress. (Sorry to be so negative about it, think I'm just a wee bit scunnered with it all.) My dad had the same problem when he was still with us. He had Parkinson's, and people thought he was drunk! Really upsetting to watch him feel like he had to explain himself to people. It used to break my heart. I ended up making a wee awareness film to try and educate people, which helped a bit. Sorry rabbling now!! I guess you either just have to learn to ignore the daft comments or do your best to explain what it's all about to people who are interested - if you have the energy for it. Losing the 'arthritis' part of the description definitely helps though. Good luck with everything
I've been saying its a rheumatoid condition sadly now no longer an issue as I need splints, insoles toe supports and now my triwalker...least nobody asks any more or moans when I use disabled parking ...every cloud and silver lining springs to mind! ((hugs)) M x
Hello. I am usually on the PMR/GCA forum. I like to read NRAS as well. Thinking today of your dear friend, Sylvi and her op. On the topic of 'you don't look ill', I read something this week, that when that is said to you, tell them, 'it's not my FACE that's ill!
A doctor Franklin Adams wrote a great article "a crisis in RA " .
It stems from the label of Arthritis. What we have is an autoimmune disease. Arthritis is a symptom of that disorder. Even most health care professionals do not understand. They think Osteoarthritis not autoimmune.
I am so very sorry you are facing this condition. I have my in laws living in a suite in my home. They are 81 and 83. What a nightmare lol Perhaps the easiest way around giving everyone an education is to say you have a Rheumatic Inflammatory Autoimmune Disease or simply Rheumatic Disease. If they want information they can ask 👍
I had same experience when I was diagnosed with AR and Spondylitis, I was 29 years old. But I did what I could to do to make me feel better and just ignored this kind of sadness observations!
Now I am 50, my body has sofer to many challenges and changes! The last is my right arm, shoulder and brest very swallow and the doctor said that's because my AR, without any other check! If you have any other health problems the first diagnosis will be because you have arthritis! Hopeful I will be ok, but because I persist with a doctor to do different exams! The cause is not AR. I'm waiting for results but doctor could see the response isn't AR.
I'm a peaceful and quiet person but I was very upset I've changed my mood because I felt like a doctor was playing and doubt of my concerns and condition. Arthritis is living with me at time enough I can identify when or if the cause is from AR or not!
Believe or not I don't give up of myself, I do what I can to look very well even when is difficult to breathe! I look younger than I am wich is hard for everyone understand and accept my sickness. So I still ear same kind of "How can you tell me you are AR patient?" or "How can you say that you have pain all over your body if you look strong?!"
Be honest with yourself learn to live with AR and never give up to be happy!
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Does anyone else have Vitiligo
anyone else have painful ankles and wrists without being swollen?
has anyone been told they have enthesitis? Does that come only with PsA or also RA? Could fibromyalgia diagnosis actually be enthesitis?
Anyone else have a bit of fun fibbing when folk ask why you have a walking stick or take ages getting out a car etc?
