Diagnosed and abandoned

Jude1984

Hi. Newly diagnosed early December but been in pain and on crutches etc since September pushing to get a diagnosis. As soon as I was diagnosed (via text) I was pretty much abandoned by the NHS and told there’s nothing they can do and that I appear to be doing everything I can.

I feel so miserable and so scared. I’m 39, I work in Early Years Childcare, I was planning to have a baby, weekend long hikes with friends were what kept my mental health positive before and I’ve always been hugely independent not wanting to ask for help.

I've tried explaining to my doctor that I can’t do my job and been trying to establish if I need to consider a career change. At the moment I’ve had one fit note after the other for amended duties. We don’t have occupational health at work because we are a charity setting so money is tight. does anyone have any experience of having had to take a career change? If so what do you do now?

I’m doing everything I can to get myself off the crutches and improve my mobility but it doesn’t look good and having spoken to people on different support sites it appears people with knee OA never really get rid of their walking aids.

I’ve put the idea of having a baby away and instead I’m actually considering breaking up with my partner so he doesn’t have to feel stuck. I know this sounds melodramatic but he really wants children and I was already a bit unsure due to my age…now I’m not sure how I would manage when I can’t even walk myself.

I’m so fed up. I know I need to accept and adapt and make lifestyle changes and work out what works for me and I am. I’ve been trying to do this for four months already (as I was so sure it was goi g to be OA) bur today I just feel hopeless.

Redlady07

I can't apeak to the first half of your letter. However you need to TALK, and I mean really sit down and communicate with your partner. No point in thinking your doing him a favour by splitting up and he's not thinking that!!

Often the partner of someone who gets ill, is also going thru it, but they do not vocalise - thinking "what should I do? will I become her carer? will I have to work, or take a lead in childcare?" Talk to other parents with arthritis. Plenty of ppl with disabilities have kids.

So you may not be able to chase em round the park and the OH will have to do more. But establish all that with him now.

noddingtonpete

Hello @Jude1984 and welcome - some good advice from @Redlady07 you do need to talk to your partner and see if you can plan your life together. It may need a bit of re-adjustment but you can still have a long and happy life together. I hope it works out for you.

Best wishes

Peter

Baloo

@Jude1984 my arthritis didn't need a career change, but it did need reasonable adjustments all round. Adjustments are important and allowed me to carry on. I face a different issue which is wether to retire or not and so far my answer has been no, having work is good for my condition, and I do not like un-necessary change.

The one time I changed career was because I had to, I was out of work and decided to retrain for something less demanding. It took 32 months to get through the studying and training. Needless to say there was no such thing as a less demanding job, being its in the nature of work to be demanding, but I am enjoying work better as the work now is more in line with my interests than it was before.

Lilymary

Hi @Jude1984 , I’m sorry you’re in so much pain and your future life feels so uncertain. A diagnosis such as this, when you’re in so much pain, can take a lot of mental adjustment.

Having children isn’t unachievable with OA. Several members of this community were diagnosed young but have had children @stickywicket , @frogmorton ) and a happy family life. It really helps if your partner is supportive, and we should help them to understand how this affects us rather than shutting them out.

As for managing your condition, counterintuitively exercise does help - very gentle to start off with, but very gradually increasing. This will build up the muscles that support the knee joint. Also getting the right balance of pain meds will keep you moving, which will do your mental health good too. Have a chat with your GP about getting a referral to a musculoskeletal clinic, and/or a pain clinic.

When I was first diagnosed with OA in my hip (I was also a keen fell walker etc) I found the tips in this link really helpful -

https://versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

You may also find this helpful

https://versusarthritis.org/about-arthritis/living-with-arthritis/work/

And this one

https://versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-knees/

You don’t need to go through this alone, this forum is full of lovely people with loads of experience and advice, they all know how rotten this can get, and they certainly kept me afloat in my darkest hours. Don’t make any sudden decisions about your relationship, talk it through, step by step, about how this is affecting you, how your partner might help you on a day to day basis, and in the future, and how he may need to be a bit more hands on with your children. It’s not unachievable, you’ll find a way.