Hello, I've just joined this forum - the first for me. I was diagnosed with ankylosis spondylitis about 5 years ago and been through lots of tablets etc, which didn't work and now on the weekly injections of Benepali. Would be good to talk with others with the same condition as the most frustrating thing about the way I feel is my friends and more importantly my colleagues, although kindly say 'poor you!' have no idea how I'm feeling. Feel like if I say anything or can't do my work I'm 'playing the same record so keep it to myself which isolating and depressing.
The rematolagy dept I visit in london are brilliant and so reassuring I have to say.
Would love to make contact with people who understand .
Many thanks
Stephen
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Stephendisley
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Hi Stephen and welcome. This is a wonderful forum with lots of knowledgable, supportive folk so you're now in good company!
I too have AS but I am lucky enough to have been very well Supported in the work place. However, I do understand when you say that unaffected people, sometimes those closest to us, find it difficult to understand what we go through - particularly as we can look so well at times.
But fear not, you e now found a place where people totally get it; again, welcome.
Thank you for such a quick response which I appreciate very much.
You are absolutely right 'well he looks ok' is what I've heard people say. It seems people know a bit, if not much, about ME or MS but not AS.
I'm so pleased to have joined this and look forward to hearing people's experience with AS and I now finally somewhere to go. You have filled me with confidence.
I've no experience of AS (I'm an RAer!) but just wanted to respond and reinforce the fact that you are amongst friends here and hopefully we can relieve some of that isolation and low mood/depression for you.
Hopefully we can answer future Qs for you or point you in the direction for further enquiry.
Hi Stephen I have RA OA and Angina and have had had them about 3 years and I'm just getting controlled now, I'm on Benepali along side mtx injections and since I started the Benepali last August I've felt a big difference, I still get pain but not as bad as I was and fatigue especially when I do to much, this forum is great for meeting people who have the same conditions and we all understand what everyone is going through 👍
Many thanks for the replies and for taking the time for doing so. It's very much appreciated. I have for years thought people think I'm making it up and received some very unhelpful comments from my work place and was made to feel if I couldn't do my work was 'putting other people under undue pressure!' which was causing me anxiety and bit of depression. I get anxiety in case I feel I can't do what I need to do and collegues talking behind my back if I can't. I have all the paper work to prove my condition to my employer, however I still feel isolated. One of my collegues said to me 'it looks at the moment you will not be promoted due to your health issues' which was very unhelpful and hurtful. That was over a year ago and I hear those words every day.
Some people are just plain ignorant and others don't understand because we look ok on the outside but we are far from it , I had to give up work last July due to my illness and after working for the local authority for 23 years I just couldn't do it anymore but have my pension as I was medically finished and at 52 I would rather be working it just wasn't possible
You are believed here (& need never pay mind to hurtful words from the ignorant). You need never feel alone. 🙏 😌 You'll find abundant understanding & loving support 👩❤️👩💑👨❤️👨 — as well as some AS information that may be of interest: Ankylosing Spondylitis (AS): healthunlocked.com/nras/pos... | Any 'Ankylosing Spondylitis'-ers (AS)?: healthunlocked.com/ra-warri...
Gosh - I'm slightly overwhelmed by all this support in such a short space of time. I'm so reassured I'm not alone as I have for years. Just had nowhere to go and say 'this is how I'm feeling' . I will be honest and say I don't want sympathy from friends and work collegues, just for them to understand if I can't do what I need to do, and I'm not using my AS as an excuse to skive of work or even social events which my AS was/ is causing. I don't like not going to work as I'm fortunate enough to have a job that is my work as well as my hobby. I'm feeling better already for getting this off my chest! Sorry to rant.
If this helps at, don't know if you're familiar with the "Spoon Theory", but sometimes showing this to folks (family, friends, colleagues . . . ) who 'just don't get it' (or think your skiving off any work task or social event . . . ): Spoon Theory, Spoonie, Spooning: healthunlocked.com/nras/pos... 🙏
Sometimes the Spoon Theory explanation helps genuinely interested folks understand the ebb & flow of our energy (& abilities) day by day, hour by hour . . . 🤔 👍
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Laughing so hard 😂 😂 😂. . . I don't consider what you've noted as a 'rant' at all!! 🤔 It barely registers as a 'mild complaint' 😳 — merely a calm, stoic 'noting of facts'. 😌 🙏 [Please, Stephen, your going to have to put more practice into 'ranting, moaning, complaining . . . ', if you wish to 'label' it as such . . . 😳 😁 😆 As an ASer might say, "put your back into it!" 😆 😁 (I'm pulling your leg gently, lovingly, dear man.) 😂 👍 ] 🙏 🍀 🌺 🌞
You're very welcome here Stephen, we have many AS'ers who I'm sure will gladly share their own experiences, good & bad. I'm both an RD'er & OA'er so my history is different but autoimmune all the same.
I don't know if you're aware but there's also the NASS (National Ankylosing Spondylosis Society) site which may also be worth a visit nass.co.uk/ though I'm unsure his active their members area is but you're still very welcome here.
Hi Stephen, it sounds as if you're doing okay if others don't notice. But also that you're damned if you do, damned if you don't in that there is talk of your condition interfering with your work. I guess that leaves you trying to pretend that you're raring to go, even when you're not, but feeling like a shirker when you do need time off or any adjustments to the way you work.
I have PsA, different disease but under the same umbrella of diseases as AS so I have heard a little bit about it. If uncontrolled it can have fairly devastating effects can't it? I'd probably mention consider mentioning the potential for serious spinal issues to a key person, at the right time! Someone not too cynical but not too discrete either. If you can subtly spread a bit of knowledge about what AS CAN do then your workmates might just pause for thought, maybe!
Then there's the balancing bit ..... mentioning how well-controlled your disease is, yeah, it takes a bit of time and a bit of lifestyle adjustment to achieve that etc. etc. but as long as you take the drugs, look after yourself and so on & so forth, you can live a normal & productive life.
In other words serious disease / great guy / cut him a bit of slack when he needs it / reap the benefits thereafter.
Yep, I'd try very hard to create a particular profile for myself and spread it around at work ideally without saying TOO much. Funny thing is, I bet those things I've suggested that you mention aren't too far from reality!
Hi Stephen. Welcome aboard. 😉
I don't have AS, I have OA (Osteoarthritis), an invisible disability. Look reasonably healthy on the outside, but screaming in pain on the inside.
Usual comments 'You don't look as if anythings wrong with you' 'Ohh your looking well' etc etc...
Anyway. Rant as much as you like. You want be ignored. Join in with the chats, we do have our ranting moments, but we also have a fun moments. It's not all doom and gloom.
Hi Stephen and welcome to the site. I've found it to be of great support and am so glad I found it. I hope you do too. I received my diagnosis of AS in October 2016 after a sudden onset in January 2016 (although after speaking to my rheumatologist now realise that I've been having AS related problems for 7+ years but it was never severe enough to seek medical advice). I am also on weekly Benepali injections.
I can totally relate to your feelings around your work, of not wanting to sound like a broken record and just trying to just "get on with it". It's so hard!!
I work as a health professional with children of all ages with additional support needs which involves lots of floor work and sitting at tiny tables and chairs - not great with a dodgy back and painful knees!!
NASS do some really good booklets that you could maybe give to your manager - "Managing your AS at Work" and an "Employers Guide". My manager found them to be useful. It's amazing how quickly people forget, especially if you're not visibly in pain and not saying you're sore. Maybe you just need to keep dropping little comments into conversation, or asking for help, just to keep it fresh in people's minds.
hi and welcome to the group I also have AS and only been a member here for few months i felt like you did when I joined its really nice to be able to ask others in the boat about how you ate feeling or what happening when the people around you don't understand your illness hope you find all the help you need from the wonderful people on here
I am a fellow AS sufferer and am on ANti TNF. I have some experience of ignorance at work too as I have recently been made to feel I was not a team player by a new DI because I asked not to be kept on duty for the 4th 12 hour shift on the trot having done over 40 hours in 3 days!
This has floored me as I sacrifice everything else in my life a lot of the time just to keep being effective at my role.
A day or two later I spoke to this DI and told her of the AS and sadly she had no idea there was anything wrong with me as I 'look ok' as my DS hadn't told her a thing about it. She apologised if her actions appeared to be 'bullying' but this made me realise that even with OHU involved stating I do remarkably well to work the hours I do considering the condition I have ultimately they can make me do whatever because of the occupation I have. Needless to say I now feel I need to re-evaluate and maybe leave the job I love and enjoy just because of a few people who simply don't get it!
I completely sympathise with what you have said. I have had that said ' well he looks ok' or 'I hurt my back doing the garden and you just have to get on with it' or the worst one was 'I thought we'd got over all these health issues with you' Not helpful. I know AS affects people in different ways and some get worse flare-ups than others. I think mine is not that advanced, if that's the right word, but still debilitating. I was asked by a colleague how does it feel and my response was 'it's like trying to drive the car with the brakes on!' I didn't go into the stiffness and the pain.
All best
Stephen
Ps. Yes, this is a marvellous forum and so pleased I found it. I feel so much more confident in expressing my feelings and , to be frank, my anger of my ignorant friends and colleagues. Suppose it's not their fault however...
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Fliying from London to Los Angeles
Poppies at the Tower of London.
Kings College London Study into the experiences of patients regarding illness and treatment
Prudential Ride London 100 - challenging myself and my body
Well, that's me home for another month - at least! 😒
