'You look well' - invisible illness - how to respond when you feel ghastly?

BAGGY

I would just say 'thanks, it's kind of you to notice'. If they know about your condition you probably DO look better to them. If they dont know, do you really want to bore them with you ailments?

Mojisola

shykins wrote: »

another problem i have is that people expect me to be able to do this or that and i cant, and as i look so well they just dont understand and think i am being whiny for saying no. i end up doing things i shouldnt for their sake and then feel worse

i too dont want to look awful but i dont want to tell everyone about it but sometimes need them to understand. which reading back makes no sense lol as i cant have it both ways

I understand what you mean. We set up a social group for the youngsters with ME because they had mostly lost contact with their healthy friends. They very rarely mentioned ME or discussed how they were feeling when they got together but they just accepted how everyone else was on the day.

If someone wanted to sit (or lie down) and not talk but was enjoying listening to everyone chat, they could. If someone who was normally mobile needed to use sticks or a wheelchair that day, the others helped but didn't make a big thing of it. If someone was much better than normal, no-one made a big issue of it.

They all said it was the only time they could go out and know that they were going to be accepted for how they were on that day without having to explain or justify themselves. When you have a fluctuating illness, that was a massive relief for them.

lostinrates

shykins wrote: »

another problem i have is that people expect me to be able to do this or that and i cant, and as i look so well they just dont understand and think i am being whiny for saying no. i end up doing things i shouldnt for their sake and then feel worse

i too dont want to look awful but i dont want to tell everyone about it but sometimes need them to understand. which reading back makes no sense lol as i cant have it both ways

Don't go.

This is important for more than one reason.

The first reason is you shouldn't go if you don't feel well enough.

The second is, if you want people to understand depletion they don't get it if you can go to everything.

You don't need to be whiny. ' I'd love to come, but I'm just not up to it. I'm pushing myself too hard''.

I don't know what your chronic ailment is, but if its one which can be recovered from then pacing yourself is really important, doing the right amount so that you have enough rest and enough stimulation seems key.

Mine isn't one of those yet doing that also really makes a difference and I have had tremendous periods of better health. Managing the periods where that isn't so useful is my weak point

madget_2

shykins wrote: »

another problem i have is that people expect me to be able to do this or that and i cant, and as i look so well they just dont understand and think i am being whiny for saying no. i end up doing things i shouldnt for their sake and then feel worse

i too dont want to look awful but i dont want to tell everyone about it but sometimes need them to understand. which reading back makes no sense lol as i cant have it both ways

This is so true!


I will say no to something that could really be detrimental to my health. The pressure can still be there, though.


As L-I-R said, you mustn't allow yourself feel obliged to do something that could cause you problems. It gets easier in time to say no. I don't know how old you are, but age helps too - I'm so much more confident now than I was when I was younger. You can also train yourself to be more assertive in this regard, even if you're still pretty young.


As you say, people can expect you to be able to do all kinds of stuff, just because you look so well. I can totally understand your dilemma about not wanting to go into lengthy explanations and justifications as to why you are unable. It can feel like a bit of a no-win situation at times.

shykins

thanks for that and i suppose i am my own worst enemy (and so i am told!!) in not telling people or trying to do too much but its my default setting and honestly if it wasnt i would probably be in a wheelchair now.

when i do say no i just get looks of total disbelief as to why i cant do something cos i look so healthy. LIR i like that comment i am pushing myself too hard and shall remember it to use, thanks.

btw i am in my 50's with fibro, osteo arthritis etc and am prob extra sensitive right now due to prolonged chronic pain episode and unfortunately they are yet to find a painkiller that i can tolerate.

i dont do much in the way of posting but this thread and its replies struck a chord with me so thankyou

clarryd

shykins wrote: »

thanks for that and i suppose i am my own worst enemy (and so i am told!!) in not telling people or trying to do too much but its my default setting and honestly if it wasnt i would probably be in a wheelchair now.

when i do say no i just get looks of total disbelief as to why i cant do something cos i look so healthy. LIR i like that comment i am pushing myself too hard and shall remember it to use, thanks.

btw i am in my 50's with fibro, osteo arthritis etc and am prob extra sensitive right now due to prolonged chronic pain episode and unfortunately they are yet to find a painkiller that i can tolerate.

i dont do much in the way of posting but this thread and its replies struck a chord with me so thankyou

I am now on patches for pain, they release an amount of painkiller all day long for a week and then on the seventh day you change it and so on.

The painkillers that I was given didn't touch the pain so this was the next level of painkiller to try. The theory being that if you take tablets the pain is controlled once you take the tablets but when it is time to take your next lot of tablets the pain has got really bad. So the patches give constant pain relief over a full week.

Maybe this would help you, I have been trialing it for 3 months not always great but deffo takes the edge off the pain.

danielley

I haven't read all the posts but I can sympathise with the OP.


I appreciate that when some people say you look well, they may genuinely be being nice, but I have first hand experience of the other side, where people are trying to minimise the condition or belittle you as they don't believe it is exists or you are exaggerating your illness.


I would much prefer people to say "How are you doing?" than tell me how they think I am doing with regards to illness.

madget_2

shykins wrote: »

btw i am in my 50's with fibro, osteo arthritis etc and am prob extra sensitive right now due to prolonged chronic pain episode and unfortunately they are yet to find a painkiller that i can tolerate.

i dont do much in the way of posting but this thread and its replies struck a chord with me so thankyou

clarryd's pain relief system sounds interesting and worth investigating.


I hope you don't mind me asking if your problem is an intolerance to NSAIDs, shykins? I have that, and they can affect my asthma pretty badly. Trouble is, I can't stay mobile without the damn things.


One consultant did find something that helped. I can tolerate Diclofenac at 75mg in a slow release format. The levels manage to keep me going, but are low enough not to affect my asthma to a noticeable degree. I wonder whether that might help with you, if you're in a similar position?


I suppose this works in a similar way to clarryd's medication - long-lasting doses, a small bit at a time. I think it might be well worth suggesting something like this to your medical practitioner.


Also, don't know whether anti-TNFs are suitable for OA? Could be worth a go, if so? (I have AS and anti-TNFs are a possible fall-back route for me.)


Good luck with trying to get the pain under control. I know how frustrating and difficult that can be and I hope you'll find something effective very soon.

taurusgb

danielley wrote: »

I haven't read all the posts but I can sympathise with the OP.


I appreciate that when some people say you look well, they may genuinely be being nice, but I have first hand experience of the other side, where people are trying to minimise the condition or belittle you as they don't believe it is exists or you are exaggerating your illness.


I would much prefer people to say "How are you doing?" than tell me how they think I am doing with regards to illness.

Very well put.

*~Zephyr~*

danielley wrote: »

I haven't read all the posts but I can sympathise with the OP.


I appreciate that when some people say you look well, they may genuinely be being nice, but I have first hand experience of the other side, where people are trying to minimise the condition or belittle you as they don't believe it is exists or you are exaggerating your illness.


I would much prefer people to say "How are you doing?" than tell me how they think I am doing with regards to illness.

But if they don't know about your illness, why would they as "how are you doing?"?

I suffer from pernicious anemia, rheumatoid arthritis and chronic IBS. All problems that have few outward signs, but all conditions that make me feel wretched.

My close friends and family obviously know about my problems and they do tend to ask me how I am doing. But when I bump into someone I haven't seen for a long time, who knows nothing of my conditions, and they say I look well I am generally thrilled to hear it! I spend so much of my time feeling like death on a cracker that to be told I do actually, still look human is quite a boost!

I don't then tend to tell them exactly how I am feeling, because that just brings everyone down and doesn't achieve anything expect making me a martyr, which I can't stand.

I think that when our conditins are particularly troublesome we are in danger of becoming as wretched as we feel. We can become too self-absorbed and self-pitying. And, while we all have the absolute right to wallow and play woe-is-me every so often, it's not really good for us to do that very often. Sometimes, we should just take the compliment with a smile and enjoy it. It's good for the soul