How much do you explain to acquaintances about your condition?
Obviously my family and close friends know about it as do people who were around when I was diagnosed 7 years ago but I never know how much to explain to others. I don’t want to appear a flake when I have to change plans but neither do I want their eyes to glaze over if I’m giving too much information.
As we know RA symptoms can vary from day to day or even hour to hour but their unpredictability and variety can be difficult for others to understand.
How do others deal with this?
Written by
Bookworm55
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I have to say I say very little if not close friends and even then I hardly discuss it now. If I do I say I have autoimmune disease which means I have good and bad days and therefore things have to be a fluid!
If someone asks for more info I tell them some basics 🥰
I don’t really even think about it. I just take the meds and forget it. I think Deeb has summed it up well. If someone asks I just say, “ fine long as the meds works”. Xx
I’m very much a sharer and tell anyone and everyone as I have nothing to hide or feel any guilt about.
I’ve found the more my friends know, the more understanding they are when I call things off at the last minute. They are also mindful about choosing somewhere accessible when we meet up and they do that automatically now without any drama.
I write about it a lot on both my personal and business social channels as I think the more understanding people have about it, the better it will be for people that come along behind me.
I’ve only once ever had someone be snippy and that was on X (Twitter) after I’d given a tv interview when someone said ‘my Dad worked down the docks for years with a bad back, go and get a job’ 😂😂😂😂 He is just the kind of person that needed to hear what I said 😂😂.
So yes, I tell people as I don’t see any reason not to.
I understand what you’re saying but it is not about hiding or feeling guilty over changing plans etc but I don’t want to talk about it just get on with my life. It is different for everyone as some are more or less able to lead normal lives including me with disease classed as severe because the meds work and I’m in remission. If a person is less able then it might well be different. There can be no right or wrong approach because there are so many variables. Although I think that all diseases and many conditions not just RA affect relationships and we should all be kind to each other as that is being a good chum or relative. Even if it’s sometimes difficult when compassion fatigue sets in.
I talk about it a lot. I feel it’s important to advocate, not only for myself, but for all ‘invisible’ chronic illness. Plus, there are so many things I can’t do or must do to manage my condition. I want to be honest about those things with friends & people I might be working with. There’s the accessibility thing - it’s always down to the sick person to ensure we have what we need, unfortunately, so best to say right out what they might be. So yes. I shout it from the roof tops 😃 & try to advocate for better & more equal conditions for people with chronic illness & disability, especially in the sector I work in.
I talk about it a lot to newbies BUT I try not to wear the friends and family down! I am a strong believer in informing people about autoimmune and what it does as people need to understand some more but we don’t know the path they are on so I tend to be a bit more cautious now. It’s a fine balance 🤪
Indeed. I would also say that I'd never expect anyone to disclose anything about their health if they didn't choose to. I am very happy to openly talk about my disease and to advocate in a wider way, but I know not everyone is. No one should ever feel forced to disclose personal information. That should never happen. We are all different. It's a choice. And as you say, it's a fine balance.
It is at the beginning I talked so much about it but when your family glaze over you know maybe time to stop preaching😂
The best thing I ever did was do traffic lights with hubby red bad day green good amber fluid day! He likes it as little talk just a colour and he ups his game a lot on the red days
I tell anyone who wants to hear. The more people know about this disease the better. I have found that most people who don't know the difference between RA and OA are very interested and want to know more.
I do let people know.In fact I put them straight when they just think I have a bad leg.It is those who forget or ask if I am better now that rattle me.. Or say well if you can do that then why can’t you do this etc.People have other lives til it happens to them
It's a challenge especially when a diagnosis is wide ranging and I can't tell them just one thing and by the time I've finished trying to explain it all they're either glazing over or probably think I'm making it up or a hypochondriac.
I'm just about to face this at my new job. After years of not working (well one or two jobs and house projects etc) I have started workin full time. Mainly because migraines whihc I have suffered with for decades are finally under control thanks to a new drug which I inject every month. However, 3 weeks in and today I had to take a day off thanks to my first migraine for a long time. I still get them but they are easy to deal with usually, but that was before when I could take my additional meds and go back to bed or lie on the sofa but I can't do that at work so I had to take a day off sick. There will be questions because I didn't tell them I had migraines or the other stuff Inflammatory Arthritis/Connective Tissue Disease/ Lupus. I'm pretty cetain that the lupus part (antiphospholipid antobodies) is causing the migraines after doing more research today. I was wrongly told by a rheumatologist that migraines associated with APS (antiphospholipid syndrome) were catastrophic and not a regular thing but after speaking to the migraine helpline today I learned that's absolutely not the case, they present exactly the same as mine do.
So I could tell them at work that I have a blood clotting problem that causes the migraines and that I haven't been taking my aspirin rather than go on a rambling speech about joint pain,hydroxychloroquin, scans, blood tests, blah blah!! I think people like to hear a nice simple name of a disease and unfortunately anything with arthritis in the name illicits a response of 'oh yes, my aunt has that in her knee' or something similar. I've started to say, 'it isn't that kind of arthritis' and then I don't say anything else unless they ask.
I'm really disappointed and dreading that this may be the start of the Ajovy not working any more. I absolutely love my new job so I hope that it has more to do with the strain of getting back into that early morning routine and that it will settle down soon. I started a short of course of prednisolone a few weeks ago becasue of unbearale enthesitis in my elbows and heels and I can't help thinking this migraine may also be as a result of having tapered and finishing the course a few days ago. All of a sudden my heels and elbows are on fire again and surprise, surprise I have a migraine.
I don't! My family and close friends are aware but tbh I don't want RA and other health issues to define me I put on my big girl pants and I'm me . If I say I'm having a quiet time I don't want questions because my closest know I might be struggling but I don't want to talk about it.
Thank you everyone for your varied responses - which can probably be summed up as ‘do what feels right for you’. As with RA itself there isn’t a ‘one size fits all’ way to respond as everyone of us is different and so are the people we’re explaining it to. Raising awareness is important- but so is not boring everyone I guess!😊 Off to have my hands x-rayed/scanned tomorrow.
I don’t! My family know. People I worked for only recently found out as I was advised to cut down my hours, as I have been struggling.To be honest I think they were shocked and amazed at what I did and have done for 18 years with RA.( I was self employed). I always think there are thousands of people living with hidden disabilities and illnesses and RA is just one of many.
I tell older people I have RA, they are usually aware of the condition and have often known older people when theywere children who suffered badly. I can then explain that treatments are much better these days and I have been fortunate enough to benefit from one of the newer ones. I then tell them that unfortunately nothing can stop the fatigue and that the immune suppressants make me more likely to catch bugs going round and that makes me unreliable, which I hate, but can't do anything about. Most people understand. Younger people I mention the lupus first as they have heard of that from the telly.
The ones who bang on about diet and vitamins can usually be arrested by me enthusiastically agreeing that it is really important to keep our vitamin D levels up, but that sadly nothing can cure the condition and that the NHS pays eight grand a year for my treatment to stop me being in a wheel chair. That usually gets through to them.
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