Oh gosh Grandma_J… I know what you mean about people not being supportive… I don’t have a husband so don’t have that worry… but my Mum, Sis, and Son really just don’t get it…
I know they all mean well (although sometimes I do wonder about that too lol)… but it really surprises me sometimes at how cutting they can be especially when:
- Mum has joint issues too, which I suspect have probably been from PsA too, but she was told years ago it’s all Osteo, and she’s hanging on to that diagnosis (rightly or wrongly)… she was also told years ago by a skin specialist that she had dermatitis/eczema and is sticking to that too… If I mention anything about joint pain, or anything, she just goes “oh, everyone has that” or “get over yourself” or her other favourite “what’s the matter with you now?”… all said with a very cutting edge to her voice… I try to make allowances for her as we believe she has early stage to moderate dementia… but it is still hard to not take those comments personally at times… especially when it is constant lol
- My Sister: has many of the same issues I do, and has wicked psoriasis on her scalp too, she moans and groans about her aches and scalp all the time, but when I as much as mention anything she always says I’m a hypochondriac… hmm… but I am pleased to report that she has finally started to mention her aches and pains to her doc and has started a trial of celebrex… it doesn’t seem to be helping her yet, but I hope she will persist and push to try something further or for a rheumy appt/diagnosis. We will see.
Even when my voice went croaky neither of them “could hear it”, it was all my imagination (funny how 3 GPs heard it straight up lol) and mum was shocked when I told her I was off to an ENT to have a camera down my throat to check it… incredulous would be a better word for her reaction, even after I told her they had to rule out cancer lol
3. My son at age 33 just doesn’t want to know, even though I have explained to him that this can have a genetic component… He is already showing ridges in his finger and toe nails (which is exactly how my nail involvement started). I guess at 33 he still thinks he’s invincible lol
Because of these reactions I tend not to say too much, it’s just not worth making myself feel worse than I already do… Oh, please understand, I do try not to “complain” as such, and rarely moan or groan, but even just trying to discuss any of it brings about a harsh response… mostly it’s better to just not say a word lol
There’s no sympathy around here , not that I want sympathy at all, a minutiae of understanding would be nice for a change though
I doubt if my March appointment will be the start of a biologic, that will be only 2 months on the full Lef. dose and I’m pretty sure it needs to be 3 months, then probably another 3 months with prednisone added (according to the protocol that needs to be followed here), but at least by then I will be nearly one step closer. Grrr… I can be extremely patient with some things, but this would be enough to try the patience of even the most patient person I think.
I am so sorry that your husband isn’t more supportive… perhaps the next time he has any issues you could point out his behaviour by saying something along the lines of “perhaps I should respond to your pain the way you do to mine [add the type of comments he uses here]” that might give him some idea of how it feels… or not lol