Lack of family support / interest

GillH

Hello. I am new here after starting treatment for RA last November. The tablets (sulfasalazine) were making me unwell though so I was taken off them about 2.5 weeks ago. Currently trying to manage without resorting to a steroid injection while wait to meet with the rhem. team and start on a new medication (they have suggeseted methotrexate). Over the last few months I have had to miss a few things completley with the family (husband, 17 year old and 21 year old) and generally not participate in things as I would have previously and would still want to.

I am getting the feeling that they think it is all an inconvenience for them and would rather ignore it all. I gave my husband some of the info booklets to read but I still think he doesn't really 'get it'. I guess being fairly newly dignosed etc then I am not in the best place / feel overwhelmed by working it all out. We have our own business and I have the role amongst other things of dealing with all the health or personal issues from the people we employ, but have nowhere to do the same.

Am I expecting too much by hoping for just a bit of help from them when they can't feel what I feel? They seem to wonder why I get so narky some of the time….!!?? 🙄

Can anyone suggest ways to tackle this please? At the moment I am just ticking off the days until getting started on the new meds and hoping they work well so I can be much more like I was before and that solves it all.

frogmorton

Hello @GillH You are having a tough time. Your first medication hasn't worked and it looks as though yor family aren't understanding what this disease means even though you've shared a leaflet.

First of all I really hope you get your Rheumatology appt soon and that the methotrexate (MTX) is the perfect drug for you. I was wondering why you don't want a steroid jab though to tide you over until it kicks in? It can take up to 12 weeks.

Families aren't always the best at understanding the pain and other symptoms (utter exhaustion) that come with RA. The thought of their Mum/Wife having a long term condition is scary for them and understandably they are ignoring it.

I imagine the children (adults sorry) are busy living their own lives and your husband might well want you back well and able to do your part with the family business. So they are all hitting the denial button. Nobody wants their lives to change.

BUT yours has and they need help to understand and pull their weigh/cut you some slack until things are more under control health-wise.

If you can get your husband on board maybe he can help get the children (I know they're not really!) to pull their weight too.

Have you read this?

https://versusarthritis.org/news/2022/february/relationships-and-arthritis-how-to-strike-a-healthy-balance/

Google the gorilla in the room and the spoon theory if you get time too.

I know I haven't helped much but do offer my huge empathy and understanding. When this hit me my children were luckily still at primary school and much more empathetic than young adults.

((()))

Toni x

Arciere

Hi There

This feels very similar to my own experience - almost neglectful I think. I don’t know what the answer is, but someone here did recently post the image below which I had saved - so thank you to the original poster.

I have become more selfish and unapologetic I think since diagnosis, especially during a flare up.

Also, if you don’t fancy the steroid injection then maybe consider asking for oral steroids - I also didn’t suit Sulfasalazine and the oral steroids were a life saver while I waited for the next thing. The GP wasn’t keen on steroids so I used my local rheumatology advice line and the nursing team wrote to the GP asking for support - which was given.

Hope this helps.

Heres the image for your fridge.

Arciere

@frogmorton

Spoon theory is brilliant - I have not heard of that before. Thank you

GillH

thank you for the comments - I was not having a good morning.

I already had 2 steroid injections last year (within the last 8 months I would say) so a 3rd feels like a lot. Maybe not though - I will look into it more.
I like the 10 things pic and will print it off A4 size tomorrow!!
best wishes to you all x

Arciere

It turns out there are even t-shirts available with the spoon theory - who knew!