一年到银屑病关节炎。你觉得一个lone?

bosh

Hi everyone. I was diagnosed with psoriatic arthritis about a year ago. I’m getting by, but there are times when I feel every day is a struggle. I find non - arthritic people can often be lacking in sympathy and I feel very alone, does anyone else feel the same? Thanks.

Shell_H

Hi@bosh, welcome to the online community!

We have a lot of info on Psoriatic Arthritis, and I know you've said it's been a year so you may well know a lot already but I thought I'd give you a link to some info in case it helps!

//www.wfysxh.com/news/2020/january/all-about-psoriatic-arthritis/

Sadly a lot of us with arthritis and other chronic conditions do find that those without just don't understand the fact that it's a constant thing. We do have a few discussions on it which I'll give you below which may help. There's also a theory which a lot of us use to help explain or discuss with other people what it's like, which might be helpful for you:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

This is a theory of trying to explain a chronic condition, with it's ups and downs and constant worries, which may be an easier way for people without a chronic condition to understand.

Some discussions which may well be if interest to you are:

• https://community.versusarthritis.org/discussion/54383/how-to-make-yourself-heard-when-no-one-seems-to-be-listening
• https://community.versusarthritis.org/discussion/53187/how-do-i-explain
• https://community.versusarthritis.org/discussion/54439/feeling-alone-when-surrounded-by-people

The community is very friendly, so do jump in and chat with others as you feel interested!

It's lovely to meet you!

Shell

Hairobsessed123

Hi@bosh

Im 6 months in myself ! I have felt positive days and lots of down days !!

I felt my family didn’t realise what a struggle everyday can be , until I went to London for a 4 day break now my husband can finally see what’s it’s like when I say I’m struggling to walk and he cud see me in pain doing things that I used to take in my stride !

my son is very understanding but my daughter thinks I’m lazy when I can’t do much I think it’s because I’m still a young 44 !! And she doesn’t understand big hugs

teabe

Hi@boshI am about 18 months into my diagnosis, after years of struggle to get my Dr to take my pain seriously. My grown up kids & husband don't seem to understand the struggles, since being diagnosed and given medication I have had a remarkable improvement of daily life, such as being able to walk up and down stairs without feeling like I am 90 years+ (I'm 48).

Unfortunately I have recently had to take breaks from the medication to have 2 carpal tunnel ops, and for some reason, some areas of my body are relapsing and not responding to increased doses, this is starting to get to me as people around don't "see" anything wrong, and I don't like to say anything as if I did I think I would be complaining any time I move on a bad day

bosh

Thanks@Hairobsessed123for your comment. I’m also in my forties and “look young for my age” and I guess what I’m saying is that appearances can be deceptive. One friend recently asked me if I go on runs, I know the condition affects people differently, but even though she’s a nice person, I don’t think she’s been listening to a word I’ve been saying.Again, nice to hear from you. Take care.

Hairobsessed123

Horrible when people don’t care enough to listen !!@bosh!!

I’m fortunate that my best friend has RA and she has been a huge help and she can see when I’m having a crap day !!!

Hairobsessed123

bosh

Hi@teabethanks very much for your comment. I also went through a very long time of not being able to use stairs without immense pain, it was terrible. Glad there have been some improvements, v sorry about the carpal tunnel syndrome and other problems. Medicine has also helped me too, but progress was slow and I can’t help thinking about how things used to be. Good to know that your family is as imperfect as mine though, no offence! Take care.

foodgloriousfood

Hi@bosh

Sorry to hear you feel very alone - it can feel like that absolutely but know that there are so many individuals with the same diagnosis who experience exactly the same emotions you are going through. I’ve definitely been there and I’ve found forums like this useful.

I was diagnosed with psoriatic arthritis 7 years ago, in a lot of pain before being moved on to biologics which helped manage the pain and gave me a sense of normality for several years. I’m 40 and have experienced my first physical flare up in 3 years which has been quite a shock to the system.

Trying to explain arthritis pain to friends and family can be difficult when there isn’t anyone with a similar diagnosis. You’ll have good days and bad days - on the bad days, be kind to yourself - it’s something I’m still learning to do.

每当你感到孤独——到达这里you have done. Stay strong and take care x

bosh

Thanks for your nice and kind comment@foodgloriousfood

Brynmor

Hi@foodgloriousfoodwelcome to the Online Community - great to have you here.

Explaining arthritis pain to someone can be extremely difficult. I found some very helpful suggestions in the section on "Your Relationships" on the website page Emotional Wellbeing which helped://www.wfysxh.com/about-arthritis/managing-symptoms/emotional-wellbeing/

Do join in across the Community, ask questions and continue to give great support! You will be most welcome.

All best wishes

Brynmor