Over the past ten months I have perfected the smile that doesnt quite reach the eyes.
Just last week I had a meeting on the fourth floor of a building at work; when I turned to take the lift rather than the stairs, the colleague I was with looked at me with such a disapproving look. I decided just to smile, but it didnt quite reach my eyes.
I know that since my diagnosis in November 2010, RA has been a huge huge part of my day to day life, which I appreciate is very personal to me. However, when I tell a colleague that I have to leave at a certain time for a blood test that afternoon, I dont expect the concerned 'ooh, is everything OK, whats the matter?' Errr... I have been having a blood test at least once a month for the past ten, this shouldnt be a huge surprise to you now?
The onset of my RA was aggressive and fast, within a month of the first symptom I had two escemic fingers (down to associated digital vasculitis), could not move my arms and spent the best part of three weeks in hospital being tested for anything and everything (I think they were hoping it might turn out to be something other than RA, which it wasnt). I cannot fault the care and support I have received from my NHS consultant and GP (since he was the third GP I had visited after being shooed away by the first two)
It certainly feels now that for colleagues and acquaintances, the problem has 'gone away'. After a difficult winter, now I'm all better, right? I keep having to remind people that this is forever for me. I'm 28 years old, and I am coming to terms with the fact that this is for the rest of my life.
I was overjoyed to tell everyone that my consultant had told me I could drop the steroids... after ten months the peak of my dosage was 60mg prednisolone every day. 'Ooh thats great' they cooed, 'no more drugs then?'. No, just the one less. I'm not cured.
When people ask how I am, its never as bad as the worst days of last winter, when I begged hospital staff to give me anaesthetic to my fingers after three weeks of not sleeping due to the agony, or when both my arms ceased up to the point that I couldnt dress myself, brush my hair, or get in and out of the bath. So, when they ask, 'How's things?', I reply 'Not bad, could be worse' and there it is, that smile that never quite reaches my eyes.
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KatyEvans
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Hi Katy E, know all about the smile which doesn't reach the eyes. Been there, done that, got the t-shirt and seen the video. Isn't it amazing when you appear to be functioning, everyone thinks you are cured! I have had to explain time and time again, that RA is for life - there is no cure - only drugs to keep it under control. Great astonishment all round from friends and colleagues. Feel I should carry some little cards to hand out with all the information on to save answering questions. One friend even asked how I managed to get the DLA - after all "you are not really ill are you". Cue loud explosion and throwing so called friend out of the door.
I know about the arms ceasing up and not being able to wash, brush,comb hair. Hubby did a good job brushing and then tying back in a pony tail so it was tidy and neat for the day. Still get problems from time to time as rotator cuff has gone on my right shoulder. Occasionally, if hubby not around, have to physically lift my right arm with my left, to enable me to tidy my hair. Knees don't work half the time although better than they were what with MTX and anti tnf drugs, hands seize up regularly and joints swell, feet are painful and think I now have RA in the ankles.
Lots of luck and love. We are all here for you whenever you want to chat about life, universe, RA, solving famine and world financial crisis etc etc. LavendarLady xx
Thank you Lavendar Lady Ive been browsing blogs and comments for the past few weeks and decided today was the day to actually write something myself! Looking forward to getting to know you all and feeling less lonely about it all. I hope the sun is shining wherever you are, its beautiful here in Kent, but Im having a lazy day so havent actually got outside yet!
Katy xx
Hi katy, I too have had RA since the age of 28 and very aggressive like you. Even now after 17 years and 11 operations people still think I'm better if they see me out and about, like some miracle it's gone away, they will never understand I'm afraid only others who have RA can do that. Doesn't matter how I feel, I've seen people when coming out of hospital after treatment etc and i still say "oh I'm ok thanks" I just can't be bothered to explain infact I think they just ask because they feel they have to sometimes.
It's something you learn to deal with as time goes on, I only open up to really close family. People judge you to, "oh your looking better today" when earlier that day I could hardly get out of bed or even dress myself! "oh yes I'm fine" gritting my teeth.
Don't let people upset you they simply aren't worth it, some people are just plain ignorant to any illness unless it's happening to them.
Take care
Mand xx
Hiya Katy.
You have had a rough few months. So glad to see though you are able to keep working. Unfortunately people just do not understand what RA is and it is the devils own trying to explain it. Perhaps you could get some leaflets or a poster from NRAS and leave them lying around at work - do you have an eatry or gathering place? OR you could round them all up in the conference room and give them a presentation!!! - well just a thought. Then again, like most people you could just probably think - sod it, why bother?
Whatever happens you are in good company here and I have found it so comforting to blog away and get it out my system. Keep us posted and look after yourself.
Hi Katie, I can't begin to understand what you're going through, my heart goes out to you. It's early days for me, I don't have a diagnosis but am already finding the unseen symptoms the worse to deal with. You know, the fatigue and joint aches.
For the record I would see the smile didn't reach your eyes. I have always used a persons eyes to see what they're not saying. It's the first thing I look at when meeting someone. You can tell a lot by someones eyes. Keep smiling luv and hopefully tomorrow someone will understand and your eyes will smile too. Babs xx
ooh dear people who havent got RA just havent got an clue.. there is a lot of ignorance/ lack of knowledge/ undertanding/ empathy.
love your blog.. im sorry you have been so bad and so young..
Bridgnorth is a nice place. I. like the steam railway
I too am just finished a long week in work, and know that smile too, I spend more time waiting for lifts, or planning short routes. My wrists & ankles very sore, probably should'nt be working at all but keep struggling along. I feel really bad for you being so young, I had three small kids at your age and don't know how I would have coped at least I only have myself to worry about now!
No one understands, they just don't, maybe the girl who sits beside me, as she always sees me taking pills and moaning! She actually offered to open my tub of paracetamol today & had two with me, which was very sweet.
Everyone has there own problems, so I don't see why we are surprised, they don't understand our RA. I have friends with Breast cancer, friends who have lost babies, friends who can't conceive, friends who have prolapsed discs, parents with alzheimers. I'm afraid a lack of understanding comes purely from lack of experience. Can we understand what someone is going thru when there mum does'nt recognise them. So chin up and live as best you can.
Gina I really relate to what you say about planning. I spend a lot of time checking routes, where are the facilities like seats, loos etc. Internet helps, but there's often an unexpected hitch. Being somewhat vain still, I don't like to take a stick, but those walking poles are great.
Good luck with the lift. Just a thought though, I was in summer school at local college of art and there was a fire alarm. The tutor was marvellous, she helped me down a long flight of stairs without allowing me to feel as though she was doing anything special. We had a very helpful chat about the impact of the ra on my art and self presentation which was really nice. Since taking part in this blog I've become aware of how important it is to value the little acts of sensitive kindness. So much else!
We all know that smile, we give it graciously, but on occasions my big mouth takes over! That's when I have really had enough though!
I was 32 so a little older than you when I got diagnosed.Luckily I'm a long way from there now (thankfully!) & am sure you will be too, it gets easier, promise, we learn to accept, cope & manage it.
People sure can be very insensitive & clueless can't they, I'd love to say it gets better but…
You will find kindred spirits on here
My fella's sister in law told me in great length all about her poor old arthritic finger (just the 1!) the other day, only bad after too many hours gardening!! Boo hoo, lol. I just sat & listened in pure disbelief, luckily we don't see them often!! Hey ho!
Thank you all so much for your lovely welcoming messages!
So reassuring to find such a great group of like-minded people who actually really truly understand! Luckily I have a wonderful family (too far away for my liking!) and a very supportive other half (I'm sure more to come on that subject once my blogging floodgates open!) and a brilliant consultant and nurse.
Very much looking forward to getting to know you all better, and no doubt having a good old moan from time to time!
xxxxx
P.S. Summer - a little confused by the Bridgnorth reference, I wonder if the 'location' tool on here doesnt work so well, as I live in Ashford, Kent. (I have, however, been to Bridgnorth and it is a lovely place!)
the map said bridgnorth . or showed it?? oh well its weird yes bridgnorth is good.. diont know kent sorry x
i think the map is dodgy - i looked to see if there were any members local to me - apparently there were over 1,000 within 5 miles - they must have moved scotland much closer to kent then!! hehe xxx
Hi Katy,
It's helpful to work out which of your acquaintances are capable of empathy (they just don't know about the condition - like most of us didn't) and those who are too self-absorbed to be able to imagine 'as if' they were in your shoes.
The first group can be educated ('I have to go for monthly blood monitoring because of the toxicity of the drugs'; 'it's an autoimmune disease' etc) the second group it's not worth bothering after all it's' all about them' in their world!
I have a mother and sister in the 2nd group but fortunately 3 brothers in the first group. Likewise I have colleagues and friends who have felt really impacted about what has happened to me.
Everyone has their own difficulties and troubles in life - often the most burdened are the ones most capable of empathy - but there are also folks for whom the path is fairly smooth, who are life and experience curious enough to want to really see and hear how life is for you today
You're still in the early adjustment phase which like the many stages of grieving, you will be cycling through many different emotions - hope, despair, anger, sadness, grief for what you've 'lost' etc. This takes time but you will reach a place of acceptance where you can approach life with equanimity.
Continue to blog and share your experience, there's a lot of support for you on here. I'm glad that you now have a helpful and supportive team
Hi Katy Evans (from one Evans living in Kent to another!)
I am with you regarding 'the smile which doesn't quite reach the eyes' (but in my case it's also 'the biting of the tongue and gritting of the teeth!!!! )
(The gritting of the teeth statement reminds me I need to see my dentist.)
Welcome here, have a rant - we do know how you are feeling, promise and ask a question - no doubt someone will either answer the question or point you in the right direction.
Welcome to the site and we have all been there with the smile thing ! I now don't bother to try to explain RA although if I am going somewhere where I am going to meet up with old collegues I take along my NRAS fund raising box asking for small change to help the charity and hand them a small statement I prepared from the NRAS site explaining what RA is and how it is a 'chronic,incurable auto immune disease' I've found that usually has the required result (hands in pocket for loose change) and shuts them up. I only divised this tactic after months of indifference but anything to help the cause !
This site is wonderful to bolster you up when feeling a little down, which we all do from time to time.
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Ive been browsing blogs and comments for the past few weeks and decided today was the day to actually write something myself! Looking forward to getting to know you all and feeling less lonely about it all. I hope the sun is shining wherever you are, its beautiful here in Kent, but Im having a lazy day so havent actually got outside yet! 
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