Emotional support

Hi. I just wondered, was anyone here offered any kind of counselling or similar when they were diagnosed?

I was ok at first, but lately I've found it harder to comes to terms with as it sinks in.

I feel like a total fraud because my condition isn't even very severe, but it's enough to affect little things every day and I really struggle to accept I will never return to 'normal' (whatever that is). I'm in my 30s.

I don't feel as though my doctors get it at all. I could just do with talking to a counsellor, even once, to get some things off my chest - the hurt I've felt at friends who haven't been supportive; the harm caused to relationships by all those months of fatigue before I was diagnosed; the impact it has on my ability to do my job; the anxiety over every test result awaited; the realisation I'll probably never be able to get pregnant because of the medication; the being fobbed off by doctors for so long who then changed their minds and didn't acknowledge the hurt and anxiety they'd caused.

But I'd feel like an idiot for suggesting it and no doctor has ever given me the impression they think my condition is a big deal at all. They write me a prescription then leave me to get on with it, telling me to come back six months later.

I really hate self-pity, but I fear that's what this sounds like. I know there are many people far worse off. In fact, I feel I've been lucky with my life generally. But just really struggling while this is so new to me.

33 Replies

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  • Hi Sami

    Really sorry to hear you sounding so low- but totally get it.

    Severe or less sever is of no reAl matter in some respects , the impact, is the impact so to speak and it sounds as if your condition impacts on the areas in your life that you hold dear, that matter. The future can be uncertain but have faith in the fact that if on the correct meds, things do look up .

    I have four children and must admit the thought of becoming a family on the meds I now take, would feel quite over whelming. But it is not impossible, maybe just needs more thought and careful managing?

    Don't feel alone in this. Speak to your gp about the possibility of counselling or seek counselling independently - it really does help to talk and find a balanced perspective on things.

    Equally, Ive always found the people on this forum willing to listen and offer advice and emotional support so you need never feel to far away from a compassionate ear.

    Wishing you the very best going forwArd.

    Marie

  • Beginning a family rather - typo

  • Thank you. I am really a very positive person and I wouldn't equate what I'm feeling with depression. It feels more like a bereavement; like I just need some support while I adjust and then I'll be okay. (And also a little vent about hurt feelings from time to time).

    I'd have no idea where to begin looking independently for counselling. I'll have a Google.

  • There will be many counsellors and agencies in your area you will be able to find - google is a good starting place!

    Bereavement is an apt discription and as such, grieving,

    A process. Best of luck with things Sami .

    Marie

  • Hi Sami_H

    They are exactly the words I use when trying to describe to people how I felt when first starting on this wonderful merry go round. I was just 40 when my symptoms started,and luckily,because I had a job with private medical cover,once the gp took months to rule everything else out,within a week of a second opinion,I had a referral and appointment to see a rheumatologist this was all very well in that they start you on steroids and DMARDS,give you leaflets and send you on your way,expecting you to know how to cope with the traumatic side of things. I struggled with the meds,and every side effect possible for about 6 months before I gave in and asked for a referral for counselling.... in the end I saw a psychotherapist,just because he was closer and suited my working hours at the time. The only way I could describe it to him was that I felt like I was grieving for the life I'd lost,and struggling to come to terms with the life I'd been left with.... it may seem drastic to some,but for me it's the only way I could describe it,because it does have such huge implications on a daily basis that I couldn't think of an area it hadn't impacted!! It only took me six sessions to come to terms with the way I'd changed my thinking,and realised that it wasn't me being lazy(when you're younger you do tend to feel lazier than if it were at my mums age) but my bodies way of stopping me from causing anymore damage(being a gym bunny 6/7 days a week,quite often I'd pop a pill,say it's in my mind and just try and get on with a class....I did it for years after hurting my back,and that was fixed with ops,so in my mind,to start with,this was fixable. I'm

    Stubborn too,so I did everything possible in order to stop it from ruling my life,when actually all I was doing was damaging myself,and ignoring that fact too😳 Luckily,he made me see that instead of grieving for things I couldn't do,I should concentrate on the things I could do,and you truly don't realise how many of those there still are until you properly sit down and think about just that one fact. He also helped me come to terms with the loss of my friends,again,these diseases are great for showing you who your true friends are ... even people/family I thought I could trust with my life couldn't run quick enough once I could no longer be their designated driver!! It felt liberating to know that I wasn't a lazy cow,there was a genuine reason for why I felt soooo shattered all the time(and yes friends,you may have had a few sleepless nights,or late ones after work,but you can't compare the two without trying to insult your 'friend',so pls stop!) it truly was one of the best decisions of my life..... even now,almost three years on,when I'm feeling really low on a bad day,I start thinking about what I can do that day instead,even if it just means getting up and sitting downstairs,instead of lying in bed...., that's still an achievement on that particular day, and before you know it,I've got just he slightest hint of a smile(my mum still says it looks like a smirk😝) painted across my face. My goals in life have changed to a completely different set to before(after retiring almost 20 yrs earlier than planned,it was bound to happen,but I can't commit to the industry I was in before,as it's just too demanding). But at least,now I've finally got what seems to be the right cocktail of meds for me,I can see a light at the end of the tunnel - I wouldn't have even said that before Sep last year!!

    I'd definitely recommend counselling,in whatever form you're comfortable with,as I always find it easier to talk to strangers than people I know.... I suppose,in a way,that's why this site is fab,because we've all been there/going through it,and as it's anonymous,we feel able to give out far more info than if talking to someone we know,and it makes a world of difference in helping. Otherwise,what about a rheumy nurse? I've found mine to be a godsend.... I've sat in her office on my appointments sobbing on some occasions, and I don't feel like I'm being fobbed off either,I've had more positive things happen since she's been involved in my care than when it was just my consultant and whichever gp I could see at the time!!

    Wish you all the best in finding someone to help you come to terms with things,and I hope you find calm within yourself too,as the added stress won't be helping.... I used to look like two different women at my worse... one from waist down was three times the size of the one above,and most of that was stress related 😩.

    Good luck

    Nicki x

  • Thank you Nicki - sounds just like me, especially the stubborn part!

    I kept proudly thinking I'd dealt with everything pretty well so far. But in fact I realise I was doing exactly what you describe - "refusing" to let it take over my life and in the process failing to really take care of myself.

    I always looked on the positive side and said "I'm lucky it's not a really severe case", but I was just ignoring the problem. I realise now that saying "Hey ho, it could be worse" didn't actually make me feel better, it just masked the fact I was actually falling apart inside.

    The phrase "You find out who your real friends are" is something I've been saying to myself a lot lately. It is definitely a big factor in the "bereavement" feeling. I am lucky to have some fantastic friends who have amazed me with how kind they can be. But there are a couple of others... it's actually a huge part of what I'd like to talk to a counsellor about because it's one thing my other friends just won't understand.

    I don't have a rheumy nurse. I know lots of people here talk about them but I've never been offered one. What's the deal with that? Should I have one? I have wondered what I'm supposed to do when I'm in pain and the painkillers aren't working and it's four months until my next appointment (that happened recently).

    Thanks again for sharing and understanding. Xx

  • Hey Sami_H

    Don't ever worry about a question you feel you need to ask,as I and many others on here have said,we've all been through the exact same emotions at some point,so we truly understand your fears. I only got a nurse after such a bad flare up in the middle of last year that my mum had to get the gp out to me, I physically couldn't move from the sofa (and it's not like I'm huge either) I literally just woke one day and was about 3/4 times my normal size,and could barely breath..... I never knew that toes could hurt so much before you'd even woken or gotten out of bed until then!! The gp turned up,took one look,asked a few questions then just said it was beyond his remit and I needed to see my consultant - I explained, through floods of tears, that my appointment had been due for three weeks time,but had been cancelled and put back another six months!! I literally was begging him for help,so he just said he'd send a letter describing my situation,and see if he could speed things up that way - I turned up at the hospital about three weeks later expecting to see the consultant,and instead saw a nurse holding her own clinic. At first I was angry and confused,but after seeing her(I was in there for about an hour) I can honestly say that she got more done for me in that one hours appointment than my consultant (same one I had when private) had done in the previous two years. She's been an absolute godsend since too..., it was only three weeks back that I was sitting in her office sobbing because I felt like I'd been let down by family,because sometimes it gets to a point where you feel that even they've had enough of your conditions,they're not in most cases,it just feels like that,which doesn't make for a happy being. She's also given me the number I need to get hold of her if I need to speak to her inbetween appointments, and also arranged for my orthotics to be arranged as a matter of urgency.... along with everything else,I've also got a completely collapsed arch in my left foot,which means as soon as I take my shoes off I'm falling all over the place.... I'd be laughing if it were someone else,but as it is,I just wake up each day trying to figure out through a tired,and drug addled brain how I must've gotten them through that particular night 😂

    If I were you,either ring your consultants secretary,and ask her about any nurse associated with the team - they usually run their own clinics where they can give steroid shots for pain,and also do referrals if needed too,so they should have one,but if you can't get hold of one that way,then I'd definitely go through your GP. Either way,you're definitely being short changed if you don't get offered an appointment with one.

    As for the stubborn part,that's why when I took redundancy,and finally had nothing but feeding the cats to get up for the first time since leaving school in '89, that I had one of my biggest flares - as the specialists explained to me after,it's because I'd been fighting it for so long,that when I did eventually give in,it was like being hit with a hammer - my body just stopped completely, which in a way helped me understand why I needed to listen to it more than I had been. It took several different drugs,and I eventually got put on Enbrel last Jan - it took until beginning of September when everything finally fell into place drugwise and I was driving and visiting family I hadn't been able to for 18 months,when after two weeks of almost getting the old me back,someone very kindly rear ended my car when I was stationery😩.... seriously,you couldn't make it up!! Even with that though,at least I'm moving on a daily basis... some days it's just a few steps,others I can walk got about 10/15 mins without getting breathless (again,something my consultant insists has nothing to do with my diagnosis,even though I've had just about every other test possible and they've all come back clear.... I know it's not down to lack of fitness either,or it would be constant,instead it's adhoc.... one minute I'll be talking and walking up the stairs,and then the next I can't get back down the stairs without either sitting on my bum,or hanging onto the handrails and doing one step at a time,wheezing like an old dear,and I've never smoked in my life either 🤔) just another little gem I can add to my list of ailments I suppose?!

    I hope this helps somewhat,if not,just message me and I'll do my best to try and help some more.

    Anyway,I can hear the pup crying(think the cats smacked her again😈) So I need to go and play referee before putting her to bed for the night.

    Take care of yourself,and I know your minds probably going at 500mph with all your questions,but I used to find drinking Horlicks was the one and only thing that could get me to sleep some nights...oh,and pillow spray or lavender pressure point balm for your wrists.... basic things,but they get forgotten amongst all the meds we use.

    I hope you manage to get some rest tonight,and I'll be back on tomorrow if there's anything else you need.

    Take care

    Nicki xx

  • Thank you so much - I have to go to bed now but I'm sure I'll lean on you again. I hear stories like yours, from people like you who obviously have more serious symptoms than me, and I think if you aren't getting the best support there is then what hope is there for someone with a milder illness like mine. But I will push some more, thanks for the advice. Xx

  • Morning - hey,don't ever compare your symptoms to somebody else's as if to say that you're not that serious,for you,this is having a huge impact on your life,and your emotional wellbeing,so it's just about as serious as it can get. No two people ever suffer the same,so please don't belittle yourself by saying that. I had to put up one hell of a fight to get where I am today,and at times I could've quite easily given in,but as I've said before,it was a mixture of stubbornness,and the thought that the gits of bosses at work weren't going to win by pushing me to quit like they were aiming for.... this spurred me on. I literally used to get up,sort cats, take forever to get ready for work,then turn up(this was the first time in my life I'd been put on anti depressants, because my direct manager and some hr grad numpty were doing all they could to make my life hell),that just the thought of work reduced me to tears,so I took the pills in order to not let them know just how much they were affecting me... again,the stubborn mule side of me came out to play😈 You will get there,unfortunately,with the state of the NHS nowadays, you have to be prepared to fight to get what you're entitled to,and if you don't feel happy with their decision,ask for a second opinion .... it's well within your rights to do so,they just won't tell you because,well,let's face it,Drs never get things wrong,do they 🤔😝!!

    I hope you've woken in a better frame of mind,and a little less pain today - there are plenty of support around,you just have to know where to look,but if you ever get stuck,or can't see the wood for the trees because of how daunting it all seems,then just nip on here and someone will either know the answer,or point you in the right direction - we've only gotten to where we are because we're further down the road as it were.... don't forget,this is my third year of this now,and I only found this site by chance after my car accident last October - boy I wish I'd had it when I was at the start of my troubles,as it would've taken so much of the stress away,even if it were by just letting me know I wasn't alone,because when you get hit with it young(I still classed myself young at 40,esp as my younger sister has always said I needed to grow up😂) I always assumed I had plenty of life left in me..... I do still,but just in a more sedate way now😝!!

    You will get to this point,it doesn't matter how long it takes,as at least now you know you've got a whole host of experts (what better word to choose for people who have experienced this firsthand?!) on here pretty much 24/7,365 to lean on,and believe me,I've used them a lot in the short time I've been on here.... some of the stuff I knew others didn't,and that gobsmacked me,to think that I'd helped other people when I didn't even realise I'd learned that much myself!! It's amazing the things you pick up without realising,and it won't be long before you yourself will be reassuring some else who's just starting on their journey😊 So remember,be kind to yourself,your body's already doing enough beating for the two of you,and even if it just means a little hobble around once for 5 mins every hour,do it,as it gives your mind a break from what you're doing,and also gets you out of a position in a chair that you'd probably be stuck in for hours otherwise.., it's little things like that that do make a difference to help getting through the day ... and if you can get away with it,put some music on,if at home,then whack the volume up for a bit and have a 'wiggle',or if you can get away with it at work,put your earphones in to just drown out the rest of the world for a few minutes every now and then..,, I find that really lifts my spirits when down... and I know you haven't asked,but you still can do gigs/ festivals when Ill like this,I and plenty of others on here have done so 😊

    So here's hoping you have a better day today,and remember,no matter what time of day or night,or how small you think the question may be,if you have a question,then it's enough to post on here - you'll prob have more than enough people respond to you before you know what's going on,and not in a patronising way either

    Look after yourself,and remember,above all,be kind to yourself.

    Nicki xx

  • Its a hard one and one perhaps needs the NHS and GP"s to really think about not just for RA but the whole host of problems that illness can face everyone with. But the cash strapped NHS is probably unable to do much so why not join the NRAS and go t a meeting new you ?

  • It "ought" to be part of your rheumy's responsibility to check that you are coping ok. I was hugely lucky in my first rheumy who was brilliant and did offer. But at the time I too thought I was doing fine so didn't take her up on it. Had she offered a year later when it had all sunk in more she might have got a different response.

    Anyway, if you don't have a rheumy appointment soon, talk to your GP. I would be quite blunt and say you are struggling to cope and would appreciate some support by way of counselling. It does still exist on the NHS but not offered automatically I imagine any more. But if you don't ask you don't get!

    You are certainly not a fraud, and have every right to ask with your head held high.

  • Thank you. I do need this validation, which is silly really. I've found the last couple of years so stressful; the endless appointments and tests.

  • Go back to your gp and ask for a referral for some counselling. I got 8 sessions and found it very helpful. But I think the starting point for you is to recognise that what you are feeling is absolutely to be expected. It will take time to adapt to your situation and you shouldn't be Cross with yourself for that or understate the importance in your own mind. I used to walk down the street just hating everyone I passed for being "ok". These are the kinds of things that you can say to a counsellor and work through - the bitterness and upset are hard to share with friends and loved ones, and any way it's a different dynamic even with a very non judgemental friend. You are not a fraud. This is real, but it will get better. I also called the samaritans a couple of times in extremis - this is not the person I thought I was, but it helped and I am sure you will come to a better place. All the best

    X

  • Thank you so much. I feel the same; that I'm not the person I thought I was. I think the stress of the last couple of years has done this to me. You know what, just chatting here helped too. But I will definitely look into counselling.

  • I had some counselling a few months after diagnosis

    In my area it's therapy for you

    They offer group sessions first and if you need one to one you can say once you have completed the group sessions.

    My colleague had counselling privately

  • Oh Sami, I completely understand where you are coming from and am so sorry that you have been diagnosed with this dreadful disease. I was where you were six months ago! Luckily at the time I had access to a Counsellor through work and for sixty minutes I sat there and just cried and cried. I needed to do this, I was grieving for the life I had, and for the future it may take, and you have every right to do that! It was only after this that I started to accept this disease and take ownership of it. Don't expect friends or even family to have sympathy, they do not understand the disease and never will unless they suffer from it. I am sure that in years to come, proof will come that RA and diet are linked, if you can get rid of gluten from your life, milk and dairy if possible, then try and see if you notice any difference. I am vegan but understand that this is a step to far for many. Please don't think I claim this is a cure but it has helped to stop my joints from flaring. I am still on Hydroxy, but keep as active and positive as I possibly can. You are not alone and your feelings are completely natural but don't give up love, fight for your health!

    Take care x

  • Hi, I've never recieved any help, diagnosed with Severe Osteoarthritis early last summer, was a bloody great shock to me. The 'grieving' was bloody awful to cope with. What I struggle to find, is local arthritis supports groups within my area, so popping onto this forum every other day or so has helped.

    Me, I'm a very laid back person (more or less horizontal), so very rarely get stressed about my OA. Family, Friends, Work Colleagues & my partner are starting to understand what I feel like, & how frustrating it is when the simplest things are getting harder to do.... But I just carry on regardless & do what I can.

    We all have good & bad days. So your not alone.

    All the best.

    Ruth 😊

  • I totally get where you're coming from. It was just before my 40th birthday last year that I had my first ever massive flare out of no where. I too have really struggled with it all emotionally. I would speak to your GP to request counselling. I think it's a completely reasonable request. This disease doesn't just affect you physically, there's a massive psychological side to it as well. Stress can aggravate symptoms too, so it's so important that your emotional wellbeing is taken care of too.

  • hey I have not read the replys but as far as I am aware RA patients can have children of there own of course you would need to talk to your rheumy about meds etc but it should not be a problem. You would have to plan your pregnancy but there are tons of women who still have healthy pregnancy even when suffering with RA.

  • I had two more of my children with my RA but it got worse after the births and I'm now stuck with it !Its my shadow 😐

  • I have had it for over 35 yrs the first treatment in them days was ibuprofen but I was not told to have it with food so I developed a stomach ulcer. Which then had to be treated so the ibuprofen was stopped. I also had my kidney removed due to stones and infections. My only treatment after that was codydramol codiene etc I did not have a choice as everything out there would damage my kidney. Then in 2004 I was started on methotrexate tabs they made me vomit ,so I then went on to injections. In 2005 I was put on etanercept, this was giving me relief till two years ago when. I

    now have methotrexate and toxicillimab and steroid tablets and steroid injections in my joints. I get urinary tract infections which go to my kidney and they are now damaging my kidney. I wear leg braces to keep my legs from flying outwards as my knee bone is worn out on both knees inner side. I also have a 27yr old type 1 diabetic son who also has schizophrenia , a 29 yr old daughter with ankylosing spondylitis which affects her hands spine feet. She also is hearing visually impaired and uses a wheelchair. My youngest boy who is 25 is autistic. I never have time to be sad or think about why me. I have to get on and look after my children as I have no one else to do this so I pray each day that I can have the courage to do what I can for them. Even though they have health problems they always help me and make me SMILE WHEN I HAVE NOT MUCH TO SMILE ABOUT. Everyone count your blessings

  • so sorry Rokia to hear about you have been through with your ra and pregnancy.

    I can only imagine how hard things must be for you and your family.

    my friend has a child with health issues luckily social services has really helped her out and she is able to get a lot with his health care problems. Otherwise she would not be able to manage on her own.

    wishing you all the best with everything. Hugs.

  • Hi there and so so sorry about your diagnosis. Whatever your numbers and the severity of your disease this is a big deal and of course the impact is huge. You can definitely get some counselling help from the GP, I am relatively newly diagnosed too and thinking of the same. I have found my arthritis nurse to be really kind and supportive( totally better than the registrar who pretty much gave me methotrexate and told me to get on with it!) I have found the support on here to be wonderful in dark times but my best support has been my OT- she is amazing and we now have phone appointments every few weeks that really help. Everyone's situation is different - whatever u feel is valid- hope you find the right help- this is a big loss/bereavement. Very best of luck😘😘

    Ness xx

  • Hello, and well done on your honest post. Everyone on here understands how isolating the unremitting fatigue, pain and misery of RA can be. I'm a Psychologist and work as a Psychotherapist but still need support myself. Recognising that isn't weakness, but intelligent and sensible. If there's one thing I've learnt in my years of practice it's that 'what we resist persists' and attempting to power through is only storing up problems for the future - particularly for the body. Be kind to yourself, you're justifiably suffering at the moment and just as you wouldn't suffer physical pain, why would you suffer emotionally when there's help available?

    You can go to your GP as others have suggested or your local IAPT centre. Alternatively or in addition you might also try something like this:

    breathworks-mindfulness.org...

    Best of luck; things will get better :)

  • Hi Sami, it might be worth taking a look at this: england.nhs.uk/mental-healt...

    It's The Improving Access to Psychological Therapies (IAPT) programme - a government initiative to make access to counselling easier for patients and one of their priorities is focussing on people living with long term conditions. The best bit is you can self-refer directly. To find your nearest option type your postcode in here: nhs.uk/Service-Search/Psych...

    You're right, coming to terms with a diagnosis IS a form of grieving: it took me years to realise that, as I spent so long living in hope and denial - "it's just a bad flare-up, it'll settle and then my life will return to normal" - except of course it doesn't! You're grieving for the carefree/pain free life you once had, and for all your future dreams which now feel impossibly out of reach. Accepting and coming to terms with this awful disease is a major step forward and seeking counselling to help with that is a great way of feeling you're still in charge, whilst living what seems to be someone else's life!

    Good luck, we all know how you feel and as Entero said, be kind to yourself - and if that entails throwing a Pity Party so be it.

  • Hi I totally agree not enough to inform us when I was diagnosed was handed a bunch of booklets

  • Dear Sami_H,

    Unfortunately emotional support for people diagnosed with long-term conditions can be quite limited in the short time that patients have their healthcare team. NRAS did a survey on the emotional impact of RA and then produced the following booklet(s) which you may find helpful: nras.org.uk/emotions-relati...

    If you haven't already found it, the British Association of Counselling and Psychotherapy bacp.co.uk/ has an online directory if you need help finding a counsellor in your area or I'm sure your GP will be able to help with other services that are available locally to you.

    The NRAS Helpline is also open 9.30-4.30 Monday to Friday on 0800 298 7650 if you have any questions and if you would like to speak to someone with RA themselves (perhaps someone who is of a similar age, on the same medication but perhaps further along in the journey) then they can put you in touch with one of our trained telephone volunteers.

    Best wishes,

    Emma-NRAS

  • I saw a psychologist about a 7 months after diagnosis and 6 months into taking MTX. At the time, my symptoms had only gotten worse, even as my MTX dose increased every 6 weeks. It was quite emotionally fragile and depressed. I found it very good to have someone to talk to, someone who let me cry (and always had a steady supply of tissues) and someone who wasn't my husband, who had dealt with enough (in my opinion!). It was very good to talk to her. That was nearly 5 years ago. She focused on trying to get me to accept the disease, though I'm not sure how successful that was. I find it pretty easy to accept my diagnosis when I am feeling well, and much harder when I am not! :)

    Do what is best for you and good luck!

  • Never, in 46 year history of RA.

  • Sorry to hear that. It's so obvious that many people would need it and they know it's difficult to ask for help so they should check once in a while and make it easier.

  • I have just been offered it by my gp, she rang my rheumatologist to ask him and I got the appointment today for the 12th April. I don't know how I feel as I feel they should do more to find out why I am in pain, not to tell me to put up with it. I was diagnosed with pmr in 2014 and since them various types of arthritis, lastly OA and told I didn't have the other conditions. I was taken off my Etanercept and told to reduce my steroids to 10. Well I got to 17.5 and flared as I told the rheumatologist I would. I have seemed to pick up so many other complaints along the way including cataracts being the latest. I started on steroids in 2014 and have never got below 12mg. I can no longer walk out due to needing a new hip and have two painful swollen knees. I feel so frustrated when it comes to things in the house that need doing as I can do so little. I would ask your doctor as mine said if the hospital didn't come up with anything she could refer me to groups.

  • What a nightmare for you. I hope the counselling helps.

  • Thank you. I hope you get some too if you would like some.

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