This is such a wonderful, understanding, supportive group. I wonder if you all might have any advice for others we interact with who might not be so much so.
Now, this can span the range from casual acquaintances, to work colleagues, to distant relations … even to good friends and immediate family. You know, the people who say, “You sound so much better,” “I’m glad you’re on the mend,” or “I’m sure you’ll be feeling better soon.”
Intellectually, I know it’s because these diagnoses are so unusual, and most people are unaware the exist, let alone how debilitating they can be. Emotionally, though, it can be really hard, and feel rather isolating.
Any tips and tricks out there on how to deal with that? Thanks!
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winfong
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I think we just have to accept that people are not that interested in other people’s illnesses usually just their own. I know people with terminal cancer who look great, we are just lucky that PMR is not quite that aggressive.
And don't they go on about their own illnesses. I have one friend who only rings up to tell me all about her different aches and pains. She never listens to anyone else's tales.🤨
I think we’ve all been there to an extent. My own family found the fact that I took steroids hard to understand. My son in law helped by explaining about our conditions in a knowledgeable way ( he’s a GP in Australia). I think, if people are genuinely interested in your welfare, that showing them something about PMR and GCA from a reputable scientific source should help, employers too. The charity may be able to provide something.I think my grown up children found it emotionally difficult to accept that I had a worrying illness, especially as it was invisible and I looked well.
Im with you , a couple of mine found it hard to begin with, my other daughter was great because my granddaughter suffers with CFS and they so are similar !
I hate to admit it, but having had PM R nine years and living with me...my husband very often doesn't get it!!.....I think he assumes this will never go away because I've had it so long....and this is how it is for me...but like today the Rheumatologist is ringing me la ter.....I am in the middle of a big flare, have had 11 MTX injections...so trying to write down questions to ask.(scans?)....OH, thinks after all these years I'm wasting my time!........but then he is a cynical person....good job I'm not!......my son on the other hand very different to OH.......
I've usually shrugged their kindly meant but unwarranted optimism off by saying "it's the meds". They mean well, and I've often caught myself saying to people how well they look. It's hard to know what to say. When someone does ask and seems genuinely interested I make sure to thank them for asking. The first thing that usually needs to be done, however, is to make sure they know it's not fibromyalgia!
Actually, no one else really understands except our friends on here.....
You have to explain that despite looking well, “It’s simply ‘The Meds’ that are working on the inflammation, giving you a false sense of ‘Wellness’ meanwhile the disease is still running its course”........
I’ve had PMR for a long time & l try not to mention it now if l can, as generally people say ‘Aren’t you better YET? Or what’s wrong with you now?’
Mrs Nails, Your 'Aren't you better YET?' reminds me of a story my sister, a kindergarten teacher, tells. She had explained to the children that she had been away because our father had died. A few days later the subject came up again, and a little boy said rather scathingly, 'Oh, is he STILL dead!'
I had a friend who always commented on how good I looked. At first I tried to explain - then, one day, I just "lost it" (sort of) and said: "I certainly look better than you - what have you been doing to yourself"? She was horrified - always made up to the nines.
This forum 👩🏽🤝👩🏼👩🏼🤝👩🏼👩🏾🤝👩🏼👩🏻🤝🧑🏿👩🏻🤝🧑🏾👩🏻🤝🧑🏾👩🏻🤝🧑🏽 made all the difference in the world as far as my living with GCA. The well informed and caring people on here made it possible for me to adjust and then learn to emotionally take care of myself. Their heart and stories gave me the courage to be my own best advocate to my doctors. I even learned how to say no, or I'm tired or simply no, thank you.
I also learned that unless someone is living one of these diseases, they can't comprehend fully, and it doesn't mean they don't care. I also eventually learned that how I felt was real and needed to be addressed whether it was acknowledged by someone else or not. To me, it is easier to accept how someone else's understanding might be limited than to try to make them understand just how I felt.
I confess, about 10 years ago, I met a young lady who had ankylosing spondylitis and even though we were close....only now do I understand what she lived with every day and night.
When I lived in Maine, I had a friend who was a nurse practitioner and could answer all my family members' questions. That really helped with my family's comprehension. Slowing me down to take the best care possible was like trying to stop a sports car by grabbing the rear bumper.
Most importantly, I knew I was never alone, and there was a group of educated and loving people who kindly shared their experiences, always looking on the bright side. I knew every one of them was hurting every day but always had the time to 'chat' and always had a smile.
This is a journey you won't have to take by yourself. I surely wish you the best; you are with the right crowd.💖
This is a chronic disease....invisible to the eye usually, and masked by the meds. This means we appear to be well when we're not, and fools people into believing we're 'on the mend' or 'getting better' when we're not. Periods of wellness only add to the confusion, so when most illnesses begin with a person being unwell and then gradually improving, it's hard for people to understand that this disease fluctuates regularly and doesn't necessarily follow that same normal pattern.. Initially friends were sympathetic and made all the right noises, but as time elapsed and they weren't hearing what they expected to hear, that sympathy seemed to wane and I began to feel almost as though they thought I was lying, or even trying to avoid work. When asked...."How are you feeling now?" or "Are you feeling better?" I'd stop telling them the truth and simply say, "I'm ok". It was easier than seeing their faces lose interest if I said I was still unwell and having to then explain why.
Nowadays, I simply tell them that it's a chronic disease that I'm managing for the long term and I suffer from frequent periods of relapse......I usually follow up with "today is a good day" or "today is a challenging day".
I hate it when somebody tells me I look well because that brings with it the expectation that you are well! All added pressure.
I think how we deal with these situations will be determined by the attitudes and responses of our own individual friends and family. Those closer to us may be deemed worthier of more frequent and detailed explanations, whilst mere acquaintances....just a simple comment that will appease their 'enquiry' and curiosity.
Ultimately, it shouldn't really matter what others think, but their reactions can and do indeed impact on us, so perhaps we have to try and do our best to explain this little-known condition in order to continue raising it's profile and therefore enable that journey for others who'll follow in our footsteps, to be just that little bit easier.
I'm not sure there's any right or wrong answer to this dilemma though.
A FaceTime call is all some people need to be able to assess your health and make the, "You look well" judgement! Really bugs me! My husband -the closest person to me-understands when I have to lie down or sleep at odd times and recognises the signs. Others who are not as close can be forgiven for their 'ignorance' but it can be frustrating. That's why this group is the best thing ever! Thank you, one and all.
You've captured how it is perfectly. Living alone I am becoming more introverted than I was when working and my husband was alive. I seem to have a pre- and post-PMR life but I've found a way to just be in the moment and not think too much about the past or future. It is helping me to cope and take each day as it comes and just try to make the best of it. Feeling frustrated, angry, or sad only gets one down and family flapping and worried, and does one no good at all.
Play some music and dance, plan the garden, walk in the countryside with the dog, eat well and try to sleep better (If only with this last one).
You make so many great points. For sure, there is no right or wrong answer. I think it is a matter of finding our own personal comfort level. You expressed it so well. 💖
I tell as few people as possible and they soon forget - better that way I think- it is personal - why do they need to know? My husband is my support and this group
Let's face it it is quite a hidden condition if our steroid dose is correct, we just feel tired and ache, which is what a lot of older folks do anyway. Most of us haven't got other awfully debilitating conditions such as RA. It is the ups and downs of it, the length of the journey and the shape changing the steroids can do that give our loved ones and us, cause for concern.
I do find that sometimes one can naval and become quite self obsessed with this condition. It just seems to be a bit relentless, one day fine and the next aching and tired. I cope with trying to be as positive as possible and brush it aside when I am able to. We all have our own ways of coping no doubt.
So much of what you said really made me smile and nod my head. Many of my friends would ask and be sincerely interested...but I found short answers worked best for all. 💖
It’s tricky as remember a conversation at least 25 years ago with my in-laws neighbour while our very young children were having a swimming lesson. She had/has MS. We were having a general chat and she was saying much the same about people and how they thought she looked “well” when she felt dreadful. I did say “you don’t just look well, you look great” as she did- her hair was done, makeup on, nice nails and clothes. I was a scruffbag. I honestly thought I was giving her a complement and she’d be pleased,truly wasn’t being dismissive but she obviously thought so and gave me a right telling off-“that’s the worse possible thing you can say to someone with a chronic illness etc, etc”. I did understand what she meant but at the time thought I was being nice. Kept my mouth shut ever since - but can see it both ways having been guilty of that faux pas years ago x
What did she want? You to tell her she really looked a scruffbag? She's have complained about that too. But it DOES pay not to dress to the nines and put anything on when visiting a doctor or benefits assessor - because they only see that too.
😂 yes, after almost 30 years still think she was being a bit harsh! Do agree with not looking too glam when going to GP( no chance of that with me) but if you get admitted to hospital have been told it’s best to look neat, tidy and generally with it to get best treatment -none of this just palliative stuff - always say you still drive and do your own shopping, even if you don’t. Perhaps the person advising me that was just joking but ...... We all make assumptions about appearance xxx
My nurse daughter says they find that MS patients in particular can be extremely sensitive about perceived slights. It is a horrible disease but they do often overreact to an innocently meant comment. I did work for the report of a big study when they were looking at interferon treatment for MS and there were a lot of quotes in it. I saw what she meant.
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Your support is wonderful
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