Other people's attitudes

Hi everyone,

I've been sick for the last 10+ years and am still not entirely sure what exactly I have. I know I have bowel issues, various vitamin deficiencies, PCOS, anxiety, fatigue, muscle and joint pain...it could all be random or could all be connected - I'm definitely not looking for a diagnosis here - don't worry - just giving a bit of background!

Anyway, I was wondering how others with long term illness dealt with other people such as family and colleagues? I'm finding people shockingly insensitive at the minute. I definitely don't want pity or sympathy - I'm thrilled not to have an even worse condition and I just want to be a normal 27-year-old, but sometimes you have to explain. I need an afternoon or a whole day off about every 5-7 weeks (unpaid time off, always) either because I'm just too ill to work, or to go to the hospital for an appointment, and some of my colleagues almost seem annoyed or jealous that I get the time off One of them asked me if I wouldn't be better just quitting the job - I was so shocked and angry that I didn't know what to say. Seriously, like? I should just give up on life and work at 27 because I need the odd day off? I know it's hard for a healthy person to really understand, but I can't get my head around that attitude. I'm very conscientious and very good at my job.

It's also tough when it comes to nights out and social events. A friend of my boyfriend's had a 30th birthday a few weeks ago. I was looking forward to it, picked out an outfit and everything, but on the day at about 4pm, I just didn't feel well enough to go. Just felt totally drained and could hardly keep my eyes open, so we texted our apologies and went home to bed. Got quite a nasty message on Facebook the next day from another friend, saying 'could you not have just made the effort?' I replied saying I was very sorry, but was absolutely exhausted and he wrote back saying 'yeah, we were ALL tired after work, it's not just you'. I know I don't have a monopoly on being tired, but I'm fairly sure that the all-consuming fatigue where you genuinely CAN'T stay awake that I get with my illness isn't the same as most people's idea of 'tired'.

I really don't know how to deal with people. If I play down how sick I feel, people think I'm absolutely grand. If I go on about it, I look like I have a victim complex. I don't really want to talk about my illness, I just want to be normal and have a social life, but people seem to keep assuming I'm being rude and anti-social when I really don't feel well enough to socialise and other people seem to think I'm somehow using my health as an excuse.

It's 11pm on a Saturday night and I'm sitting in yet again because I just don't feel well enough to go out. I went out for 2 drinks last night until 2am and it's just knocked the wind out of my sails. I've barely done anything today and took a long nap this afternoon, but I'm still wrecked. I'll probably have to take tomorrow to recover as well. Why anyone would think I'd WANT this is beyond me.

Hersheys

I could write your post.

There's a saying "don't judge anyone until you've walked a mile in their shoes" & it doesn't ring truer than in illness.

People, unless they've been there, don't understand how debilitating certain illnesses can be. Right now I've had to cancel a work meeting next week because of a 1 hour car journey - my tummy is too unpredictable & I don't fancy squatting on the side of the motorway.

I have depression & anxiety. I don't tell people because they immediately look at you with those pity eyes. Don't pity me, respect me that I've come this far even though I've struggled on the way.

Other people just don't understand and to an extent I can't blame them - I'm not defending them but I can see their logic and reasoning. "I was tired last Saturday night but still went out - why don't you come?" They just have, luckily, never had to experience it themselves.

Yeah, people just don't understand.

I get a lot of that 'we're ALL tired, love' or 'we're ALL stressed', as if they think I'm just imagining I have it so much worse. I'm ill, I know what I feel isn't normal. I don't belittle anyone else's feelings, I'm just trying to explain how I feel, but people never really get it unless they're ill themselves.

CathyMoran

Other people deffinatly do not understand - even had a cruel comment from my daddy where he said that we should not have had our children. He is dealing with a long term illness for the first time in the past few months and I must admit that I am finding it hard to be sympathetic when I have been ill all of my life and my daddy always said that I had to get over it and that it was in my head (none of which is the case). I am lucky that my husband understands but he is very ill himseff a lot of the time. If you look normal you do not tend to get any sympathy I have found.

I am greatful to be still alive (am a cancer suvivor among other things) but I can not do certain things such as socialise in the evening and eat much.

ash23

Generally speaking I've found people to be very supportive. The only negativity I've had is usually in relation to me avoiding travelling home (2 hour drive each way) for a weekend because I know it will well and truly wipe out any sort of energy I have and take a week to get over it.
I suppose it is hard for people to understand. They are tired, they go to bed and they wake up refreshed. I never wake up refreshed. It's just a case of feeling tired all the time and if you push that tiredness, you end up exhausted.
I need at least 10 hours sleep a night and 2 hours rest before bed. So for half the day I am lying down. And all that enables me to do is go to work every day and spend a couple of hours with family in the evening and the bare minimum of housework.
It won't allow me to do much else. If I want a night out I need to rest during the day in order to be able to stay up for it. And I need to know I won't have anything to do the next day either so that I can rest.

There are good and bad days and I suppose I can understand why people get frustrated with me because they are used to me being able to go places and do things.
I would probably have been frustrated with someone like me two years ago but now that I suffer from it, I realise what it is really like.

If people want to think I'm lazy, let them.
I suppose it's marginally easier for me because I have a diagnosis, a name to put on it.
It must be hard not to be able to say "I have xyz so I am not feeling well and can't go tonight".

Dizzyblonde

OP, having an invisible illness isn't easy. If you look okay, people assume that you ARE okay. You reach a point where you just don't even tell people about it unless they absolutely have to know.
I haven't got a solution, and I think it's harder when you're young and your friends are all doing things that you can't. I just wanted to say that I know how you feel, and there are a lot of people with the same problem. It does help to be in touch with others who have a similar condition, and when it comes to explaining to those close to you, I find the Spoon Theory helpful. It was written about Lupus, but applies to many chronic illnesses.
I hope you manage to get a firm diagnosis because it does help to put a name to your illness.

Splendour

ash23 wrote: »

I suppose it's marginally easier for me because I have a diagnosis, a name to put on it.
It must be hard not to be able to say "I have xyz so I am not feeling well and can't go tonight".

I could have written your post too Izzy Wizzy-as ash has pointed out not having a diagnosis makes it all the more difficult as people really don't understand.

I've had an undiagnosed illness for the past 8 years and just yesterday I sat and cried when I was told my lasted test came back all clear. The frustration of not knowing and not being able to tell people what I have is very trying to say the least. The worst of it is, I look perfectly healthy and push myself as far as I can so people assume I'm fine most of the time.

Truth is, people want to think you're doing okay as that way they feel better...

ash23

ash23 wrote: »

Generally speaking I've found people to be very supportive. The only negativity I've had is usually in relation to me avoiding travelling home (2 hour drive each way) for a weekend because I know it will well and truly wipe out any sort of energy I have and take a week to get over it.
I suppose it is hard for people to understand. They are tired, they go to bed and they wake up refreshed. I never wake up refreshed. It's just a case of feeling tired all the time and if you push that tiredness, you end up exhausted.
I need at least 10 hours sleep a night and 2 hours rest before bed. So for half the day I am lying down. And all that enables me to do is go to work every day and spend a couple of hours with family in the evening and the bare minimum of housework.
It won't allow me to do much else. If I want a night out I need to rest during the day in order to be able to stay up for it. And I need to know I won't have anything to do the next day either so that I can rest.

There are good and bad days and I suppose I can understand why people get frustrated with me because they are used to me being able to go places and do things.
I would probably have been frustrated with someone like me two years ago but now that I suffer from it, I realise what it is really like.

If people want to think I'm lazy, let them.
I suppose it's marginally easier for me because I have a diagnosis, a name to put on it.
It must be hard not to be able to say "I have xyz so I am not feeling well and can't go tonight".

Really sorry to hear about your diagnosis, Ash.

I totally know what you mean about being tired all the time - can't remember ever waking up feeling refreshed at this stage! 'Very tired' is pretty much my default setting. Got 9 hours sleep last night and still totally drained.

Dizzyblonde wrote: »

OP, having an invisible illness isn't easy. If you look okay, people assume that you ARE okay. You reach a point where you just don't even tell people about it unless they absolutely have to know.
I haven't got a solution, and I think it's harder when you're young and your friends are all doing things that you can't. I just wanted to say that I know how you feel, and there are a lot of people with the same problem. It does help to be in touch with others who have a similar condition, and when it comes to explaining to those close to you, I find the Spoon Theory helpful. It was written about Lupus, but applies to many chronic illnesses.
I hope you manage to get a firm diagnosis because it does help to put a name to your illness.

Yeah, I found the Spoon Theory article a few years ago. It really helped me to explain to my boyfriend how I feel. In fairness, he's always been lovely and understanding, but it is hard for people to accept you're not feeling well when you don't 'look sick', as you say. I wear a lot of make-up now to hide my acne, dark circles and dull skin, so people often tell me I look 'radiant'. It's the three layers of foundation and blusher and thick black eyeliner!

Splendour wrote: »

I could have written your post too Izzy Wizzy-as ash has pointed out not having a diagnosis makes it all the more difficult as people really don't understand.

I've had an undiagnosed illness for the past 8 years and just yesterday I sat and cried when I was told my lasted test came back all clear. The frustration of not knowing and not being able to tell people what I have is very trying to say the least. The worst of it is, I look perfectly healthy and push myself as far as I can so people assume I'm fine most of the time.

Truth is, people want to think you're doing okay as that way they feel better...

If you don't mind me asking, what type of illness do you have?

It's a really tough one not having a diagnosis. On one hand, it's a relief to be told you don't actually have lupus/Crohn's/whatever they currently suspect, but on the other hand, it's frustrating still not having any answers. I often get to the point where I feel guilty for saying I'm ill when others have serious conditions with names, and wonder if it's all in my head, but rationally, I know it isn't. It's just hard not to get broken down by other people's comments and snide looks and end up doubting yourself.

Splendour

Jairo Acidic Signboard wrote: »

If you don't mind me asking, what type of illness do you have?

I have many symptoms but the most prevalent are; constant tiredness, exhaustion, weakness, headaches, weeping ears, stuffed nose, hoarse throat, 'flu like' feelings, sleepiness and my main one has been brain fog although I've been taking Co Enzyme Q10 for a few months now and this is definitely helping clear my head which is an absolute God send!
And apart from a couple of brain lesions, on paper, I'm perfectly healthy.

I also find the financial end very stressful as I haven't been able to work for the past couple of years.

ash23

I have MS. A couple of spinal lesions, couple of flecks on the brain, various relapses. Diagnosis was pretty quick. My first relapse last year was somewhat overlooked and passed off as something else. But from relapse 2 to diagnosis only took 3 months.

Obviously being diagnosed with something like that is a b*tch but then again, it tends to shut people up.

"I can't go, I'm tired"
"You're always tired"
"Yeah I have MS so that's why I'm always tired"
"Oh.......anyway......"



There's no negativity. Just pity :rolleyes:

The 3 months awaiting diagnosis were horrible. Test after test. It was so stressful. I was on edge all the time. The diagnosis was nearly a relief aswell as a devastation. So I can't even imagine going years without a diagnosis. That must be horrible.

Splendour

Splendour wrote: »

I have many symptoms but the most prevalent are; constant tiredness, exhaustion, weakness, headaches, weeping ears, stuffed nose, hoarse throat, 'flu like' feelings, sleepiness and my main one has been brain fog although I've been taking Co Enzyme Q10 for a few months now and this is definitely helping clear my head which is an absolute God send!
And apart from a couple of brain lesions, on paper, I'm perfectly healthy.

I also find the financial end very stressful as I haven't been able to work for the past couple of years.

I have most of those too. Do you ever wonder if it really is in your head? I've been feeling like that for the last couple of days. Silly, really, as having severe IBS alone (which is something I know I do have) will cause most of these symptoms but the doctors and most people I know seem to think IBS is a bit of a joke illness and shouldn't cause these issues.

I'm starting to feel a bit pathetic. I've taken a lot of time off work and I know my boss either thinks I'm a liar or that I'm a drama queen and am wildly exaggerating how bad I feel. He kept asking me what I have and it's so hard to explain it without being able to just name an illness. He's diabetic and he has no problem working, so it makes me feel like maybe I'm just being a pathetic crybaby and exaggerating what's wrong. I know deep down that I'm not and I'd love nothing more than to be 'normal' but that's how it feels when you get people's reactions.

Have you tried 'alternative therapies'? I'm thinking of trying accupuncture/massages/whatever - can't really afford them but nothing else seems to be working.

Splendour

ash23 wrote: »

That must be horrible.

It is ash, although I am sorry to hear you have MS, I almost envy you as you at least (as you recognise yourself) have an 'excuse' for your tiredness. Though I imagine some people may not be too understanding about this either!

Jairo Acidic Signboard wrote: »

I have most of those too. Do you ever wonder if it really is in your head? I've been feeling like that for the last couple of days. Silly, really, as having severe IBS alone (which is something I know I do have) will cause most of these symptoms but the doctors and most people I know seem to think IBS is a bit of a joke illness and shouldn't cause these issues.

I'm starting to feel a bit pathetic. I've taken a lot of time off work and I know my boss either thinks I'm a liar or that I'm a drama queen and am wildly exaggerating how bad I feel. He kept asking me what I have and it's so hard to explain it without being able to just name an illness. He's diabetic and he has no problem working, so it makes me feel like maybe I'm just being a pathetic crybaby and exaggerating what's wrong. I know deep down that I'm not and I'd love nothing more than to be 'normal' but that's how it feels when you get people's reactions.

Have you tried 'alternative therapies'? I'm thinking of trying accupuncture/massages/whatever - can't really afford them but nothing else seems to be working.

Oh you so have my sympathies Izzy-it's difficult not to feel like a drama queen when you don't have a diagnosis. I haven't worked properly for 2 years (done bits on and off),am going for an interview on monday and am terrified if I get the job that I won't be able to keep up with it!

I've gone down the 'anything and everything' route and spent a fortune on the way. I can't afford to do anymore of that so just have to keep going to the neuro and hope eventually I'll get a diagnosis. That in itself is so slow though-six months in between each visit.

I went for a walk today to a place I used to jog in and got so tired today just walking, I had to turn back. There are days when I weep from despair of always feeling this way. Thing is, people think I've an odd 'bad day' when in fact it's the opposite for me as every day is bad with an odd 'good day' thrown in! Every single day I wake up feeling exhausted and 'hung over' and everthing I do is a big effort.