Regaining Confidence and Sense of Self After Major Flare?

Stillslife

Hi, this is my first real post here. I've lived with Still's Disease since childhood and have been flaring for the past 2-3 years. We finally seem to have found a drug that is helping and I am hoping to return to my job in September. It will be almost two years since I went off sick but they kept my position open.

I have some concerns about how I will manage physically, but it will be a phased return and overseen by Occupational Health to see if any adjustments can be made, such as transport to work. I'm hoping my stamina etc will improve by getting back to normal routine again.

My main concerns are mental / emotional. I have lost so much confidence during this flare that I find it hard to even imagine myself in the workplace. During this time I've been off, I haven't heard from any of my collegues and/or people I considered friends there. I'm worried about how I will fit in again and that this side of things won't be supported like the physical side will. People expect that now the Still's is more controlled I should be my 'old self', but it's not as simple as flicking a switch.

I'm trying to give myself small goals every day to try and gain some confidence back, to be my 'old self', but sometimes it all just feels too overwhelming. I have a month ahead where this is going to be at the forefront of my mind and I want to feel able to cope with work by the end of it, not that I've stuck my head in the sand. Yet thinking about it also makes me feel quite panicky.

Not sure what to do for the best? Any advice would be appreciated,
Thanks,

stickywicket

Hello Stillslife. A very appropriate username, if I may say so Officially, I have Still’s too, but I usually say RA as Still’s, when it’s not even Adult Onset Still’s, sounds silly at my age – 66.

I think you’re doing very well to be going back to work after two years. Anyone would feel apprehensive, whatever their reasons for absence, even if they now felt 100%. It’s a shame that your colleagues haven’t kept in touch but I suppose they have their own lives and troubles to deal with. Try not to let it worry you.

Having said that, this disease does definitely rob us of our self-confidence at times and, as you say, it’s all too easy to feel overwhelmed and panicky about new things. However, each step you take will increase your self-confidence. There are few things quite so exhilarating as doing stuff that terrifies us and finding that, yes, actually, I did it. And next time will be easier for that.

To be honest, I think you’re doing everything right. You’re having a phased return, overseen by Occupational Health which should help a lot. Do you think people are really thinking you should instantly be your old self or is that maybe just a fear on your part?

I think it’s very impressive how you’re facing your fears and not allowing them to dominate you and you’re even sharing them. The only other thing I can suggest is that you continue to do that. Share each fear with us and let us try to help you through them. And don’t forget also to list each triumph, even the minor ones. Share them with us too, if you like but, most importantly, keep a record for yourself so that you can see how far you’ve come. I hope it goes really well for you.

suzygirl

Hi and welcome to the site, I totally identify with your post. It does take away your confidence and I have found that people do expect you to be 'normal' if they see you doing usual activities. That is because they do not understand. We do, which is why as Sticky said you need to keep talking to us.

Maybe you could go in one lunchtime and speak to your colleagues? Or explain to your boss about how the disease affects you. I think it is amazing you are going back to work and I am sure it will go well. You will make new friends and soon get your confidence back.

Unfortunately this disease does cause loss of friends. However those that stay by you are true friends. I have made many 'cyber' friends that make me laugh and have shared my journey.

Stay in touch.

elnafinn

Hi Stillslife

I am very happy for you that at long last a drug has been found that is helping you. No wonder you are extremely nervous about returning to work although it would seem they are putting everything into place as well as they can with a phased return and OH involved as they should be. Also very good of them to keep your job open. You hav been away a very long time and it will seem like a first day in a new job and will be extremely tiring,

It must be very upsetting for you if not one colleague has been in touch other than those who are for obvious reasons contacting you so that they know what is going on with your health. If only one person had taken the initiative make contact with you, I am sure you would feel so much better about it. Did you try to liase with any of your workmates whilst you have been absent? Perhaps in that time some may have left and there are people that you have not met yet so you can make new friends.

I think you are doing very well. Hold your head up high when you return to work and do your best. No one can ask anymore of you, can they?

Gentle hugs
Elna x

barbara12

Hi
And a warm welcome from me
I bet you feel a little better getting all this out, it really is good to talk about things.
Know wonder you are nervous, but you be proud of yourself, has for your colleagues, well you go in therre with your head held high, and just think to yourself what they would be like if they had to deal with the same.
I really do wish you well with it all xx

Stillslife

Thank you all for your replies, I do feel so much better for just talking about it and hearing other perspectives. I've been writing a Still's Blog for Arthritis Care, which does help me manage things, but for this I guess I need that extra reassurance.

I've always used the end of flares as a new start in the past, to go on to bigger and better things; this is the first time I'll be going back and facing the 'consequences'. It will definitely be like starting over, which I'm fine about. I'm lucky that I always enjoyed my job and feel able to manage it again.

I'm more worried that it won't be the same and that relationships will feel strained as a result of my time off ad that I'll be treated differently. I'm really good at explaining things in the world of arthritis and hospitals, I guess it becomes a sort of comfort zone in a way. But I struggle to explain when people ask what's been wrong with me in the 'normal' world.

I tried to keep in touch with people from work, especially my team, but it all went quiet last Easter. I can't help feel a bit upset by it, but as one of you said, perhaps they just got caught up in what was going on there. I was thinking of just being honest with my boss and saying that I feel out of the loop and need some support getting back in to it, maybe suggest a meeting to discuss my return to work with my team there or something. I guess that first time seeing people will be the hardest and then it should get easier from there. It's not like I have done anything wrong or to cause resentment.

I need to find a balanace between letting people know that I am still not 100% and need support, whilst not sounding like I'm not capable. I've found that people really do think there are only 'well' and 'ill', with no middle ground, especially when there are no visible signs of illness now I'm walking unassisted etc.

I definitely feel better for talking about it, so thank you. I think I was feeling more stressed NOT facing up to my anxieties, now that they're in the open I can see that there are ways around things. I'm even starting to look forward to going back. I just hope I can hold on to those positive feelings.

It really has been a rough ride for me these past few years; my doctors were not very hopeful for recovery since I had tried all the different types of drug-mechanisms going and had run out of options. Infliximab seems to have turned things around though - a surprise but not one I'm complaining about!

Just shows there is always hope

Thanks again,

Laura x

elnafinn

Hi Laura

Perhaps you could email/text, call a couple of your colleagues there and suggest meeting up for a coffee in a lunch break or similar. Perhaps you could break the "silence" rather than wait until they may contact you before your phased return. At least then you may not need to worry so much about what your first day back may be like. It takes two to tango as they say! What do you think? If you only make contact with one or two word will soon go round the workplace and it hopefully will not feel so strange. Your work colleagues will be having mixed feelings just like you, for different reasons but surely if contact was made it should be make you first day easier.

Enjoy your weekend,

Elna x

LignumVitae

After a period off work I felt just how you described and working with mainly men, I too had suffered from a total lack of communication. The day I went back, totally terrified, I was greeted like they'd been waiting for me to return and took me out to lunch at a rather fancy restaurant. I had thought that they all thought I was not worth remembering but in fact, they just hadn't want to pressure me and hadn't known what to say. Things are a bit different now and if I ever am off for even half a day my mate Matt is texting and emailing to check how I am! Your colleagues may be similar, just not sure what to do so as Elna says, why not drop a line to somebody and take it from there. Good luck, I think you are very brave and determined to get back there and I'm sure your colleagues and friends will think so too! LV xx

Stillslife

Hi again,

I'm not sure I have the confidence to get in touch with people and go for lunch, that's part of my problem. I've really lost a lot of confidence; it is taking my absolute all to get out of the house and ride a bus on my own right now, which is why I'm finding things so hard and taking little steps. I've been housebound / wheelchair-bound for much of this flare, very much dependant on others, so it's hard to get my head around suddenly being well enough to get on with things myself, although it is obviously what I want!

I'm hoping it will be how you describe LV and that things will just be as normal in the workplace. I know it's hard for others to know how to react. I just feel I need support emotionally with the return as well as physically, breaking in gently I guess.

stickywicket

I’ve kind of assumed, Stillslife, that, as an old hand at this, you’re aware of The Spoon Theory and The Gorilla in Your House. If not, do google them as they are useful aids to explaining to others how arthritis affects us.