How has your diagnosis impacted friends/family/social interactions?

[MaddieHU]

Today we'd like to hear how arthritis has impacted your social life?

Has there been an impact on your Partners? Parents? Children? Friends? Or other extended family members?

[Patient0]

Having arthritis has been life-changing but not all bad. I have had to say no to some outings and I have often been to parties and gatherings where I have been totally distracted by the pain which often strikes quite suddenly.

I was in a bad way long before I was diagnosed with arthritis and there was a lot of anger and many unresolved issues which caused me stress. The best thing that came out of my diagnosis is that I took initiative to look after myself and put my needs first for a change. Consequently, I have improved my relationships with just about everyone. I have also taken a step back from people who cause me continual stress, like my parents. I still speak to them but I don't take too much responsibility for them. I also have 2 children under 4 so before diagnosis, the pain and fatigue made dealing with them very difficult, especially at the end of the day, after work. I was getting so angry and then I would feel bad about it. The diagnosis helped me to work out how to help myself get closer to my normal self and as soon as I got some control back and started meditating, I started to be calmer and found better ways to handle my kids and other relationships.

The diagnosis helped me to get more understanding and support from my husband. I was angry with my husband not pushing me to do more than I was doing. I felt like he'd just accepted that this was all I could be. I needed a push to get my life under control. Our house was a tip, our social lives were dwindling, our kids were bored and my husband seemed to lack motivation. Once we knew what was going on, getting help and advice was easy.

My family don't say much about it and it disappoints me how little they have asked about what is going on. I do feel much happier now with some people at arms length.

[Deniseelk]

It has changed my relationship with my husband as there are times when he is my career. It possibly has made him more thoughtful and understanding. I know it pains my daughter to see me unwell and I hide a lot from her. My parents worry as does my brother. I think my friends try to understand but don’t truly get it but I have decided it is best to take the attitude of how can I expect somebody that doesn’t have RA to truly get it. I have to be honest with them and tell them if I am just not well enough to do something. Probably the best outcome has been that I am so aware and understanding of hidden illnesses and am much more patient with people as we never really know what they are experiencing in life.

[popsmith1874]

Hi Maddie, well it has totally changed my life as I had to retire medically at 51 and took me about 6 months to come to terms with RA , but now I'm in a routine and keep my self busy and try to exercise to keep my joints moving , also my social life has changed a lot as I don't go out as much now but understand a lot more about RA now and found that I'm not alone thanks to this wonderful community who have helped me cope with this illness

[hawker955]

Yes and no! Every time I've been out recently eg to a regular pub quiz I develop a cold within a week. All those infectious and unhygienic people around I think. So I'll miss these in future. I do manage cycling-competition but once my anaemia was fixed by Humira, that has not been an issue for me.

But I am very careful if going to anything involving a lot of people-contact!

[Alexplode]

Since my diagnosis of Psa a year ago my life has changed dramatically, I am in a lot of pain and suffer from fatigue. The things I used to enjoy, holidays, social functions and shopping are no longer on the agenda. I am thankful I did not have this dreadful diagnosis when my children were young. I need help to physically get out of bed and even to open a jar.

However, just had a bit of good news, I am starting on Costenyx next week so fingers crossed its going to work.

[amberly87]

It has greatly impacted my life. Mine was undiagnosed for a long time (give or take 10 years). I have fibromyalgia also, and that’s what I was receiving treatment for. The feeling bad everyday causes me so much stress and anxiety and makes stabilizing my moods beyond difficult. It’s hard for healthy people to understand the impact feeling bad daily has on your mental well being (especially for me, as I am only 31 and the pain has been chronic for around 10 years; 20-30 year olds don’t understand chronic pain). These mood swings of corse impact my relationships. I am lucky enough to have an understanding boyfriend and 7 year old, but a lot of my other family and friends don’t understand. I also get down on myself because I want to be a better girlfriend and mother and I wish my conditions and medications didn’t impact my roles. It also makes me feel less that when I have to spend a majority of my time resting, which just makes me feel like I’m reclusive and lazy. I worry about making plans because I never know how I’ll feel. I would never wish my experience on someone else, but I do wish there was more information with thorough explanations about the pain we feel physically and emotionally for those we are close to. Even though I’m lucky enough to have understanding people by my side, I still wish there was a way to convey to them what I go through and the reasons why I need them to be so understanding.

[Caza]

Tough one,my family & friends simply don’t understand. They never ask me how I am or mention it. It’s the elephant in the room. My hands were very swollen red & painful the other day & I said to my husband ohmigod look how bad my hands are, his reply was, there’s nothing that I can do & I’d sooner you didn’t point them out. Nice one 😟. It isn’t that my family are uncaring they’d just sooner pretend that all’s well with me which makes me feel very much alone. We went to a family wedding last year which involved a lot of traveling. I insisted that I had a days rest either side of the big day, they just didn’t get it. It didn’t work out like that so I was in a great deal of pain that day (& I can’t take painkillers) so I didn’t enjoy the day 😞. As for friends they don’t make allowances either but now I will say if I can’t make it & try not to feel too guilty about letting them down. All in all a Lonely disease

[Kb5417]

I used to be the life and soul of the party 🎉 always had a smile always optimistic always had time or compassion for anyone. Ra has changed me, no matter how much I try to be the “old me”. I don’t have the physical or mental energy to keep it up.

I’ve never been a selfish person but feel that I now need to listen to and look after myself. No one without this invisible disease understand the mental or physical toll it takes on you.

My current favourite word is “inconsiderate “ because family and friends don’t understand that after a full days work I’m tired or aching in places I never knew existed. This impacts on sleep which impacts on the next day and the next and so on and so on, blah blah blah....

I have reduced my friend network to exclude selfish friends, a lot of which I have known for years. My marriage very nearly broke down and close relatives are oblivious to the toll it takes out on me because I will need them at some point in the future but am scared of ailienating them by being too needy now..... lol.

I do try to avoid sites like this as other people’s bad days drag me down too because I initially think “oh god that’s what I have coming next” but I also understand that we’re in this together and the lovely people on here are just like me at any given time. We’re the ones that understand each other at our best and worst because unfortunately we’re in this ra elite club together.

And to be honest we can be honest !!! We can smile or cry together cause we know what we’re living with, support each other and get through it 💕