We all know how much we hate being told that you are looking well when...
A) you are feeling rubbish
B) you know you are overweight and bloated and none of your clothes fit
C) you have acquired a round face and three double chins, and scrawny hair
D) we are on these drugs for years, and are unlikely to come off them all and be completely cured
I can't find a happy medium between being a health bore, or saying something vague that is completely untrue. The latter can mean that I'm asked to do something far beyond my energy levels, and then regarded as a wimp because I've opted out!
Written by
BronteM
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The problem of course, is that we do look better than we did, because in the early stages we looked dreadful. So even with the added weight we look "bonnie". We feel better than we did so we do our hair and try to make ourselves feel better about ourselves. These people are just concerned and being nice. It's the ones who say "my god, you've put weight on" who aren't nice.
I have a couple of answers to the nice ones. "Thank you, I do feel much better than I did" and leave it at that, or sometimes, depending on who it is "Yes, much better thanks, but appearances can be deceptive" and give one of those "you know how it is, I won't bore you with the details" looks, even though they don't know how it is.
John just says "he is fine".. then disappears for an afternoon sleep or goes to bed very early as his Duracell Batteries have run low. He still has monthly blood tests and visits the hospital every 12 weeks.
It has taken a long time for the "grown up side of family" come to terms with the fact that John has not been quite as well as he looks.
When he was first diagnosed 12 years ago, we all thought we would lose him and it scared us all so very much, but then after the initial treatment of IV Cyclophos and Prednisolone (which saved his life) he bounced back as though there was nothing wrong and some of the family actually thought he was better!!! Only the younger members of the family who still lived at home realised he was not as well as he looked on the outside. They now have a much better understanding of Vasculitis (WG) than the older members of the family who did not live with John on a day to day basis.
I find giving people one of VUK's "Understanding Vasculitis" leaflets helps people to understand more. I recently had coffee with Dorothy, who is a trustee and has MPA. At the next table was a lady I used to work with a couple of years ago. This lady called to me and said her niece had just been diagnosed with Vasculitis and she knew John had it, so she asked about it. No further a do, Dorothy whipped out of her handbag one of the "Understanding Vasculitis" leaflets and gave it to this lady. So I now carry about half a dozen with me all the time! you never know when you might need one.
I was very interested in the "Understanding Vasculitis" leaflet - would you be able to let me know where I could track these down. I have been seeing both Ipswich and Addenbrokes hospital for 18 months now with Aoritis/Takayasus/GCA/sub-clavian and iliac vasculitis, and have never heard of this leaflet - which is a great pity! Thanks in advance for your reply. I find very few family,friends, neighbours etc understand and this sounds much more than helpful!!
I tend to thank them for noticing and either acknowledge that today is a good day or say 'looks can be deceptive' or I get good and bad times/days. I might also say 'thank you, the tablets seem to help'.
I often meet people who ask how I am and to them I say 'just getting on with it, you have to don't you?' this usually brings the conversation back to them.
I have my close family and friends who I do discuss things in more detail with, if they ask, but generally people are just being polite and don't know how I really feel, why should they?.
Hi bronze I know exactly how you feel and I feel the same. I never know how to answer politely whilst being true to myself. I usually say I have good weeks and bad weeks. But even though I explain I have an autoimmune disease not just problems with walking caused by nerve damage they always seem surprised by my reply. I often feel guilty as I can be quite 'off' with people if they catch me on a bad day.
When I was first diagnosed with Vasculitis in 2009 . I was in the same situation as yourself . People saying your looking good . Looking well . Ans some even looks like theirs nothing wrong with you . But you know and only you know how you feel inside . I spoke to John Mills who runs this site. He kindly sent me some hand outs that you can keep in your pocket . They give information on your Vasculitis ask John Mills if he still has them .. So if your friends do say you look well and don't understand what it is you have wrong with you .just hand a card to them and it lets them find out about Vasculitis . I did it and its a great way to pass the word about Vasculitis to friends and relations . As its know as the invisible disease you look good from the outside but it hurts on the inside .
I totally agree. I've found myself feeling the exact same way!
Sometimes I get annoyed because people keep asking how I am...and sometimes I actually answer. But than I think do they really want to know the long version and so I just say. I'm okay. Or today's a better day.
It's crazy...I'm very similar to you in that I developed cushings so my physique is a lot rounder everywhere. Initially couldn't even recognise my own face. But am getting used to it....taken 3 months!
The worst is as someone mentioned....I do try n comb what's left of my hair n make myself remotely presentable to make myself feel better so now people think we'll she's obviously well as she takes the time to dress neat....arghhhhhh!
I think it just depends on my mood on the response. When I'm really moody. I say I'm alive thanks. But I also feel bad coz they genuinely do care otherwise they won't really ask. I'll ask for some leaflets too...that way people have a better u understanding. I actually emailed the route map tp Some people including my manager at work...
Further to the above, personally if someone says that I 'look well' I generally say 'thank you' and think something rude! depending on how I feel. Different if a friend, someone who knows my condition, compliments me- I'm not THAT much of a 'crab'!
Do you have the support of family, and fiends, hope so it makes such a difference. Clearly you have the support of this forum, for which I am forever grateful to John and Susan, but the support of family makes such a difference.
You have my best wishes, and prayers (can't do any harm, can it)
I remember someone who, on being asked "and how are you?" [in a head-tilted, patronising way] replied "still above ground," to which mrs-not-really-interested said "oh that is good!" she'd clearly not listened.
I choose my reply as to who's asking, but mainly "you know, so-so" or "ups & downs"
Thank you so much for all the great ideas...what would we do without this site where everyone understands us? I think the key is in being true to ourselves, and trying to keep the comment realistic and, if we can, relatively light hearted. I also like the idea of saying something that turns the conversation back on the questioner.
My close family are wonderfully supportive, and so are good friends; it's the casual queries in town that can really finish me. We also have a family wedding coming up...it includes a hen party for the bride that is booked in a spa. I'm absolutely dreading it.
I say do you want to swap body's for a while, or should have been with me when I woke up durning the night and when I got out of bed and couldn't move.
Also have a headache and wish my head would fall off for want of better wording
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So I now carry about half a dozen with me all the time! you never know when you might need one. 
Just to have a nag
Do you have positive or negative experiences of taking prednisolone? 
Anyone else have the same dilemma?
Nasal Douches
Parents meeting at school 
