I recently went to a family funeral and I didn`t really want to go but I wanted to pay my respects and I didn`t want to make my family look bad by not attending so I thought I needed to show my face which I did. Hardly anyone said hello to me and no one made conversation with me so I was stood there like an idiot. I tried to say hello to a few people but it`s hardly an occasion to be overly friendly. I sincerely regret going as I don`t do well at large social gatherings as I don`t enjoy socialising with people who are not my friends. I generally avoid large social gatherings as much as possible as I don`t care for them at all and my arthritis always flares when I get worked up and I suffer with anxiety if I have to attend such as the family funeral. When I was driving home on a very busy motorway, I had pain all over especially down my breastbone. It was a long drive and the traffic was horrendous due to alot of roadworks. I could have had an accident but I`m a very good, careful driver and my determination to get home safely, did get me home safely but all it takes is a lapse in concentration and I could have an accident.
I don`t believe it`s a good idea for me to repeat this in the future as I`m getting older and my health is not great and as part of my arthritis, I get costochondritis down my breastbone and ribcage which is horrible at times (usually brought on by stress and anxiety) and I worry about my future health as people with arthritis can develop heart and lung problems later on when there is constant inflammation.
I really need to look after myself and even be more selfish now even if it means ignoring advice from family and friends such as suggesting I should show my face at a funeral I didn`t want to go to.
It`s not through nastiness that I want to be selfish but my health will deteriorate more if I don`t look after myself really well. I live on my own, far away from my family and my family are getting older now and not able to support me in the ways that I need at times. I`ve only got myself to rely on.
I`m sure there must be others who have had to disappoint family and friendly by not being able to attend funerals, wedding, social events etc due to ill health and suffering with social anxiety that makes their arthritis alot worse. Stress and anxiety are the main culprits for causing my arthritis to flare so minimising anything that makes it worse is a must. Also I detest socialising in alot of situations anyway now as I find there are alot of nastier people especially since the lockdowns. It`s best not to care what people think of you in these social situations as I guarantee those people don`t care about you as a person.
I`d like to ask what experiences others out there have had and how did you deal with it?
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Celticdancer
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Hey, I really understand and agree you’ve made the right decision; and sorry to hear how you were treated.
The biggest learning I’ve had since diagnosis last year is about being more selfish / putting myself first. It’s completely out of my comfort zone, having had a lifetime of putting other people’s happiness above my own, but it’s something I’m slowly getting used to.
I made a similar decision last Xmas, about two days before we were due to be reunited with family, who we hadn’t seen since before the pandemic. At that time, the Covid rates were going back up again and I was scared, as I hadn’t had Covid, so didn’t know how it would affect me. I called my Dad to tell him - he spoke at me (with his usual emotional blackmail approach) and I just stared back at him without any response (deliberately), but eventually he realised I wasn’t backing down and he had to accept my decision. It was really tough, but I knew it was the right decision for me at that time. Stress also affects my RA and this particular decision / situation led to my finger swelling up for about five months.
I’m also now letting go of friendships, where the other person doesn’t put in as much effort as I do. It’s not worth it and I don’t want the stress / frustration anymore.
You’re doing the right thing to do what’s best for you. I wish I’d done it so much earlier.
Probably the most difficult thing I have had to deal with since my diagnosis of RA is the disappointment I cause my family because I can no longer fulfil my role as a dutiful daughter / sister in the way they think I should. Funnily enough my friends accept me as I come these days without a problem and if I have to cancel something at the last minute they are more worried about me than the missed treat. The latest drama is that my mother, who lives a couple of hours away, wants me to go and stay with her for a week. However three weeks ago I dared to catch a cold / cough and my RA is now having a wild party with its friend costochondritis and I cannot sit / lie / stand in one position for any length of time. Hence I am replying to you at this time of the morning instead of sleeping. Yesterday my mother lectured me about giving into pain and how she would not allow RA to stop her doing what she wants - she could always live my life so much better than I can. I shall visit her when I am better whenever that is but it will be on my timetable and not hers.
How one deals with this I do not know. It would be very easy to let their attitude hurt me and destroy what satisfaction I get from living my best life. In the past I have pushed myself to do what my family wants when they want it and have paid the price but I have now realised that there is no appreciation for my efforts / pain, only criticism and disappointment. These days I tend to think of the difference in attitude between my family and my friends and do what is best for me. However, guilt is always there.
Understood. I am having to re-evaluate relationships and shedding toxic friends and family who expect massive emotional, financial or other support while offering nothing back. I don't feel guilty.
Thank you for all your replies. I`m sorry for any guilt that your family have put on you. People using emotional blackmail and having these ideas not to let arthritis get in the way of your life obviously don`t understand much about how arthritis works. The reality is, is that by having firm boundaries and cutting toxic relationships is a must in order to help control our arthritis. I`ve always been a very giving person and gone above and beyond for others and it`s hard to stop doing this if you`ve always done it. I have no choice but to stop. I`ll let my body tell me what I can and cannot do.
Hi. I have missed my cousin's funeral, my sister in law's brother's funeral who was also a friend and my best friend's brother's funeral because I was terrified of getting covid. I have to say that everyone concerned was very understanding about my situation but that didn't stop me from feeling terrible and stressed about them all. I particularly felt bad for my sister in law because we are very close. I did really beat myself up about it and made myself ill and very down, crying a lot and feeling like I had let them down. On saying all that, you are right. We have to take care of ourselves. Some people will understand and some won't but the bottom line is - Is it worth it to risk potential serious health problems? If the shoe were on the other foot, I would be asking someone in our position not to come because of the risk. It is a difficult thing to do but a risk assessment must always be taken.
You have to do what is best for you and if that means not going to a funeral so be it. My hubby wouldn't let mem go to his sisters interment. I went to her funeral jsut not to intern her ashes. He felt i couldn't cope with the round trip. Our daughter drove her dad down to Cambridgeshire and back.xxx
a very old dear friend died recently. I couldn’t attend her funeral, she’s in Cornwall I’m in edinburgh. I contacted the people organising her funeral, sent them photos for a memorial they were planning. I felt fine about it. It was my friend I knew not the others. But I did feel sad and will always think of her
It’s so hard isn’t it. You feel you should do something, even want to do something but know that it will either hurt, cause discomfort or make you unhappy.
This year for me has been interesting looking back. I went into a massive flare in March and had to cancel a cruise at the last minute with a friend. I couldn’t put my right foot on the floor so it was impossible. I offered to pay for my friend if she chose not to go. Well, what a palaver that became. I was worse than the devils spawn and to say we fell out doesn’t even touch the tip of the iceberg.
Next was my brothers wedding. A three hour drive when driving a couple of miles was agony. I couldn’t go. He completely understood.
Then this month, the closest person in the world to me died and I’m heartbroken. I took steroids to get to her funeral as it was very important for me to be there. The ex friend from the cruise was also there and we hugged and had a proper conversation and we’re friends again too.
Guess what I’m saying is, do what’s important to you so that you can conserve your energy for that. Particularly when you have no support. I get that as I’m in your position and it’s hard for people with partners/children to understand how tough it can be when you’re on your own.
No one else is in your shoes and won’t understand how you feel and it’s none of their business. You do you ♥️💪🏽
I think it’s also about balance and taking each situation as it comes. I hadn’t physically attended the church I belong to since before the pandemic and just took part via zoom. However, when my twin granddaughters were being dedicated a few months ago, I did attend, because I knew how much it would mean to my daughter and son in law. They are so helpful and supportive to me in many ways, I felt it was important to support them on this occasion. At the same time, I have also missed concerts, social events etc that I would have loved to go to because I felt at risk.
Hi Celticdancer
A lot of your post resonated with me. I share some similarities with you.
I have PsA which affects my tendons and as you say, can flare up with stress, etc. I have hearing loss and a balance disorder. I need to face people and talk one to one. Like you I find big events like funerals, weddings, parties extremely stressful. A bit of an ordeal. I have anxiety too, tied to new experiences and the idea of not being able to hear.
I missed a funeral last Christmas Eve. I felt very bad about missing it but I get a bit of sensory overload at Xmas with all the noise, bright decorations etc (though I can enjoy it too, hard to explain) I simply could not face the thought of the journey to the funeral and all the people. You did very well going and driving too. Maybe explain in future that it is too much for you with your health and that you will be thinking of the person that day. Difficult to get the message across to others, I know. As others have posted here, there's all the other effects of arthritis to take into consideration. Plus lowered immunity.
Your costochronditis sounds very painful. And of course there's brain fog, fatigue - the whole knock-on effect afterward an event.
I have to cancel things if I feel unsteady or overwhelmed with my inner ears and I've realised some people are very understanding, others have drifted but that is okay. I have a much smaller social circle...
...just to gently challenge, you are using the word selfish which suggests you feel you may be letting people down - but there is a middle way where you explain to others that you may not be able to attend something or you might just go for a short while. I think a lot of people are re-evaluating their priorities these days. I try to be kind if I can, without getting drained! And that is a new approach for me that I'm working on at the moment. Take care 💐
think we all do things we don’t feel like doing but Im stubborn I push myself to do stuff then I suffer afterwards normally for a few weeks lol my youngest son and daughter inlaw were going away with kids and asked me to go with them in summer I went out with them some days and others I stayed back. But boy did I suffer when I got home. I went back to being a hermit. I don’t have friends that pop round anymore I’d say I’m no longer living I’m exciting
i totally agree, you've made the right decision, I don't think people realise how difficult it is for us, trying to find the easiest way to get there, will there be stairs to negotiate, all leads to stress, something we don't need, and I bet nobody asks if we need any help with these journeys etc they just think we're awkward, your post has definitely struck a nerve with me, so I say enough is enough, and lead your life as you want to.
"I think part of the problem is that people hear ‘arthritis’ and think it’s just achey bones."
And that is something we can do something about! Instead of saying we have arthritis we should be telling people that we have an autoimmune condition. Because that is what RA and PsA is. As is Hashimoto's, lupus, and many others. There are more than 80 autoimmune conditions, but we tend to sort people into the end symptoms, that is which part of the body our immune system attacks rather than the underlying cause.
Maybe we should start telling people we have an autoimmune condition, and then they will understand a little better that it isn't just a bit of an achey bone. Especially when the NHS is putting the narrative that osteoarthritis doesn't really hurt, and more exercise will make it better!
It’s not being selfish, it is Survival. If other people see it differently they can lump it. You can see that you will lose a week or whatever, by forcing yourself to do something, they can’t.. It’ll be upsetting whichever you choose, so do what’s best for you, and they can go jump..
I've just been invited to my grandaughter's graduation, but I've explained to her that, although I would love to go, I just can't manage it.
It would mean a five hour car journey , then the activity at the other end, then sitting through the ceremony, going out for a meal afterwards, then either staying the night in a hotel or driving back again. It would completely wipe me out and I'm not sure that I could even manage the ceremony.
She said that she was disappointed but that she completely understood - and I think that she does as she has seen me deteriorating and being able to do less over the years! I don't like that sort of 'false' event anyway and don't feel that I want to go. It will be enough for me to celebrate that she gained her degree.
I think that you have to be honest with people or they cannot understand. And I would echo those who emphasise that it's important to refer to it as an "auto-immune disease", not "arthritis".
These days I don’t make plans in advance. I prefer to say I will go if I feel up to it but will let them know either way. I missed my dads funeral but it was a four hour drive away and I was in a bad way myself at that time, on top of that we were in country wide lockdown and funerals were very limited in numbers. I know my dad wouldn’t have wanted me to suffer as a result of going all that way and would have understood completely. I was lucky enough to get a video link. My daughter wrote the eulogy and the vicar read it out as neither of my daughters felt they could go as the distance for them was even further. My sister went and I helped to make a floral wreath (well chose some flowers). That was all I could do and I don’t feel guilty about it. The stress of losing my dad was enough without knowing he didn’t have the send off he deserved.
Good morning, I used to meet with team colleagues who like me had been redundant through covid. Whennwe worked together as typists I was fit and active, walking miles with groups and alone, doing day trips. The girls were shocked by my ill health and I felt awkward shuffling around and needing help so sadly no longer keep in touch. Have no family and rarely go. Last month I went on a coach trip to the peak district, spent time in Bakewell, coped with the walking well, later there was a 2 hours canal boat cruise with afternoon tea. the staff said I was using my disability so I could be helped/carried by a fit, handsome young man, a member of their staff. The laughing got rid of a lot of pain and discomfort. Out and about some people can be quite nasty when I'm struggling. Next week I begin a new pain killer. Her name is Misty, a sad looking, lonely middle aged cat from CPL.
Hi Gnarli, the rescue centres are full of cats needing loving homes. Some need extra love. I had a cat with NO EYES, Kris. He used his other senses to get around and lived a decent life, often perched on my shoulder, wrapping himself around my neck. He's been dead for years and I still miss him. I live alone so the cat will be company.
Yes, I understand that so many cats (and dogs and many other pets) are in shelters wanting and needing homes. I am very fond of cats but we live on a busy road, I'm allergic to cats and Himself really doesn't want a cat. Like Kris my much-missed cat, Genghis, loved draping himself round my neck like a living tippet. He made me sneeze but I loved him dearly.
I’m quite hard now and just say a blunt no if there’s something I can’t manage. When I’m having a flare no one looks after me, so I don’t feel I owe anyone a thing 🤷♀️
The only person I put myself out for is my son, who is amazing, always.
hi celtic sorry to hear you being like fish out water but thats family for yousounds like you mite have issues with one or two of them but the main thing i wanted to say is when going on something stressful like that (same prob did not go to my sisters funeral but SORE SORE at the time) what do think about taking steroids tablets for types of things like this not sure wethe you can drive with them but they make tons better dont know if doc would prescribe for this but could cough a few times maybe dont shout at me if its a bad idea for just thinking for you
I am fortunate in that my family and friends are supportive...except my mum and my partners neice. My mum puts emense pressure on me to attend and do things that I am not fit for.
Over time, I've just learned to say no, I don't explain anymore , I just say no and repeat when my mum asks again, and she does 🤷♀️. I just say no and let the silence hang until she speaks again.
My partners neice does not invite us to events anymore after I cancelled attending a meal the day before the meal, in her house was due to take place. I was informed by a third party that she had been at a large work event without telling me, just as we were coming out of the pandemic. She knew I was still being very careful at that point and took choice away from me without a care for my health. We still chat , but there is a distance between us that wasn't there before. I can live with that.
I was told a long time ago that it is not being selfish looking after yourself, but rather soulfish.
It does get easier the more you do it. Do what feels best for you, it is the only way.
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Sulphsalazine - not sure I want to continue taking it!
Why does everyone you talk to have arthritis?
hiya im new to this forum ,i have joined for me and my mum :)
and look forward to learning lots :)
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