I recently read an online article about people with chronic illness being wrong judged or accused of 'faking' their illness and the negative impact this has on their mental well-being, always having to prove their illness.
It's difficult striking a balance of how you feel, how you want to feel and how people judge you are feeling (or maybe I'm just over thinking it?).
And this goes back to the many times asked question of how to respond to the dreaded 'How are you?'
I'm speaking for myself when I say; you're generally positive and you don't want people to think you're a big moaner but you also don't want them to think you're 100% well and lazy, lethargic or deliberately slacking off.
In my case, I just avoid situations which will highlight my weaknesses or I put a big brave (ruddy red) face on to keep up with the crowd.
The same article came with a picture of some make-up with a caption of 'How are you faking it today?'.
This also hit a chord with me, because I do always put a bit of make up on before I leave the house, concealing all the give away signs of restless nights and toxic drugs.
But then again, I would never leave the house without makeup before, it just takes a little longer now.
A couple of months ago, I was offered a job but I had to decline it, because I had omitted to tell them about my illness during the recruitment process and it was subject to a health screen and I just didn't want to go there for fear of rejection.
At the same time, in an almost parallel existence, I found was exaggerating how some of my symptoms, were affecting me, to my doctor to get them to take notice.
So, I was wondering to what extent others have to go to, when proving or hiding their illness?
I know what you mean. It is just human nature to put on as brave a face we can muster when asked, "How are you?" So we wanly smile and say, "Fine." Then quickly change the subject to some other mundane one, like the weather. Always a good thing to have a moan about, the weather.
When we really should say," Well, my Granulomatosis polyangiitis is flaring a little and that together with my chronic kidney disease, It's at stage four now you know, and my mono neuritis multiplex is playing havoc with my ankles and did I tell you about my neuralgia affecting my teeth, can't eat a apple without some jarring pain and swallowing, well, let me tell you about that....................................You never finish the sentence as you watch the other person's back scurrying down the street.
Then again, if at an assessment for DLA/PIP/ESA, what is the point of relating such grand words to the numpty taking notes. Even they don't have an inkling what you are talking about. "Never heard of it, mate. Is it serious?" while marking their notes, Client is breathing, smiles, is articulate, can reason..............SUITABLE FOR WORK PLACEMENT.
Yes, I know what you mean. It's a cruel world, innit?
I think it says it all when you walk into the GP and they say "and how are you today" At this point I think to myself If I was ok I wouldn't be here. My set reply is I am fine thank you. If they then persist I start to list all that is happening and as the zone out. I stop talking.
If a doctor asks - I work on the assumption they do actually want to know. If they don't - then actually, they should have done. I have been known to respond with 4-letter word starting with s...
I NEVER put on slap (wouldn't anyway so nothing new there). If I feel rubbish - I say so.
Sorry you feel like rubbish. Take care and I hope things get better soon x
Hi Rasp,
I wish I could be as entertaining as Albasain with my answer!
When I read your question the thing that immediately sprang to my mind was the fact that my illness was labelled " significantly psychological " by my then Rheumy and " a complex psychosomatic illness " by the Psychiatrist that the pain clinic sent me to stating that I should be " open " to ideas.
Whilst neither of these technically are the same as " faking it " it did have a profound effect on me as my perception was that I wasn't believed.
Things have moved on but I still struggle with the anger I felt at the time, not helped by the fact that I had to make a formal complaint about my care in order to be treated properly.
I have never been one for make up although I do know it would improve my appearance! I do like nice clothes, shoes and jewellery though and try to make sure that I am dressed well when going out.
I have developed blepharospasm, a form of dystonia, so my ill health is more apparent now when I am out as the lights in shops and exertion bring on attacks. I force myself to live as normal a life as possible and put up with shop assistants stressing as they think I am going to keel over. Unfortunately, whilst not life threatening, the spasms have meant that I have had to give up my driving licence and forced me off work for 9 months now, I will almost certainly lose my job because of them.
The only person that fully understands the extent of my illness is my husband as it affects him on a daily basis too. The only positive is that I don't " sweat the small stuff " anymore! I do think that what we live becomes our reality, the trick is to adjust your life without giving in and adopting an " invalid " mentality.
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Thank you Keyes, for your thoughtful and honest reply.
I can completely relate to your closing sentence about avoiding an invalid mentality.
It can be so easy to fall into a trap of self pitying (been there and thrown away the t-shirt).
Those closest do know the real 'us' and mine even know when I'm hiding my feelings...which is quite annoying.
I hope your health returns to allow you to live the life you'd prefer and you can move on with your treatment. You are a true example of someone who has had to fight to prove their illness and that isn't fair.
You have my up most respect for the tenacity you have shown, I think you're amazingly strong.
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You are too kind Rasp! I am lucky to have had the knowledge, support and resources to fight on, many don't.
And that is the entire point really isn't it? I assume you saw the diatribe I had aimed at me by "I'm a GP, the other aren't" and the resultant outpouring from patient after patient who felt they'd been let down by their GPs and consultants. Mostly represented I suppose by this lack of interest on the part of many medics in how whatever we have affects our lives. For 5 years I repeatedly told the GP there was something wrong - I can only assume I was disbelieved and I'm pretty sure that any one or more of those labels was stuck on me and remain in my notes. I don't live there any more, those notes are irrelevant.
I'm very very lucky, I only have PMR symptoms - no-one was ever willing to look and see if it is really a large vessel vasculitis (GCA/nonGCA) which is what the local rheumy here thinks - and it responded well to 15mg pred. I had a year on Medrol which was hell on earth - it was far worse than the disease in fact and I had a few other things piled on top. But at no time have I been as ill as most of you on this forum. Now at 5mg pred I feel pretty good - just little niggles that are so vague it would be unfair to complain about them.
But I was lying in bed last night thinking about the half dozen or so people I know fairly well through the PMR/GCA forums who almost certainly have a vasculitis, very probably GCA or something VERY similar in presentation. They aren't typical so they are/have been treated in some ways as if they are making it up, even by some of the supposedly top people in the field in the UK. A few have been sent for PET-CT - and lo and behold, what did they find? Vasculitis. No apology from the big cheese who had said definitively NOT GCA, just handed over to another registrar for the news and the prescription.
I think it is, to some extent, the result of top down management and it is to be hoped that the younger, upcoming generation of rheumatologists that I and many of my peers are stuck with will become more broad-minded and learn to think out of the box. Is there really such a big difference between the run of the mill rheumy and the people who branch out into vasculitis?
If we can't have a doctor who takes us seriously then there is no way we'll get any respect from colleagues and family either. In the meantime I shall keep on doing what I'm doing. I am involved with research people that allow me to express patient points of view - all suggestions gratefully received.
Yes it is amazing just how your account mirrors my 10 years of ill health with Churg Strauss Syndrome. I am seen as a faker on many occasions and I have suspected in the past this has denied me promotion, my line manager was a control freak and workaholic and only wanted 'non-defective staff'. I went to great lengths to explain vasculitis yet the interest and duty of care was non-existent but still it didn't stop my managers calling me behind my back when I was unpredictably off sick from work. I was diagnosed with severe cardiomyopathy and severe heart failure related to Churg Strauss Syndrome in March 2015 and have been on long term sick since that time. Yet during this time not one manager has contacted me to ask how I am. I had this attitude 10 years ago and it annoyed me then but now I laugh about their sheer ignorance. Hopefully my medical retirement will come through soon and I will be free of the work burden caused by ignorant managers. In terms of faking it, most of the staff I work with fake colds for time off. In contrast, I have forced myself to work in the past. I have even heard my section manager say 'we can't carry him any longer'. Very annoying as I have worked at home through bad bouts of Churg Strauss Syndrome symptoms and chest infections. All this prejudice having worked in the same department for 32 years!
I think you and Malcolm1959 must have both had managers from the David Brent School of A' holes. I have worked for a few of them too. Fingers crossed Rowmarsh.
Thank you Raspberry_tea. It will be such a relief if I can leave work early.
I do feel for you because I had the same problems.These people don't know what we have to go through on a daily basis they say ignorance is bliss.if only these prejudiced people had one tenth of our courage.I put up with comments behind my back at work. Like he's not as ill as he makes out.I have been off work for nearly a year and finally got pensioned off last month.even my old gp was just as bad dismissing what I say.and looking at his watch as much as to say I'm wasting his time.and another time said I was taking to much of his time grrr.
Even though he knew the conditions I have.systemic vasculitis,type 2 diabetes (insulin dependent and 4xmetformin) underactive thyroid.disc prolapse.osteoarthritis both feet.coccyx removal.of which I'm now constantly on morphine.high b pressure.frozen shoulder with surgery twice.but we get on with it. It used to bother me but don't let it anymore.we carry on regardless
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Wow, Malcolm...just a few daily distractions then. Thank you for your reply.
I can identify with the need to hide just how you are feeling..
I have had this condition for several years and I still think I have not mastered the art of replying to ' how are you'. I also have always tried to look on the positive side of things which I believe does help to manage vasculitis and the many side affects.
I had been quite poorly but I wanted to get out to our local park just to get some air. I met this lady whilst I was out and she came up to me and said "How are you" well I replied fine thank you
Very angrily she turned and said "well why are we praying for you in church"
I must say I was speechless and I am glad she just went off thank goodness she didn't wait for a reply because it was one question that left me stumped.
I think we are all worth a hundred of the selfish and ignorant managers that pretend to have our best interests at heart. What really makes me howl with laughter is when one of my managers suffers a cold or infection and comes into work exhorting how bad it was and the need to take a dose of steroids. steroids! the other manager replies, you must have been bad! So stupid really.
if a person as cancer people come and ask how u are and have syphany for u but when u have vasulitus people ask how u are but dont understand this woman needs to look into things instead of judgeing
To 'how are you?' I give an honest but short answer to those who know what's up with me. To others I make a cheerful comment about the weather. My husband does the same when asked about me. I know some of the folk who ask have their own long-term, much worse, conditions and appreciate their concern.
As to how I feel about myself, I think I'm still the same 'me', just a less active version at the moment. I can hardly complain about my good strong immune system, built up by years of healthy living and exercise, as it's part of me - just a bit wayward at present
I think that we are conditioned to be polite, have a stiff upper lip and consider ourselves fortunate, which is why I believe the honest response to 'how are you?' is so very difficult.
It would be rude to indulge in the finer intricate details of vasculitis affect you, because: a) who's got the time? b) I don't know if I could do it justice. c) do they really need that level of information? d) you don't know what they're concealing behind their own polite 'I'm fine too'.
For me my whole life changed when I was diagnosed. I was a mum again, I gave up my job, I had my first encounter with a serious illness, it was the first time I had to take serious medication and I became briefly incapacitated...of course this has altered the way I feel about me as the way I viewed life has been challenged. I have more strength than I realised but more points of weakness too.
Thanks for asking, tea, I guess I'll find out how the flare's going at the end of the week when latest bloods are done
Not sure I have such a thing as a coping mechanism, any more than I have had in the past when cold, wet, tired and scared. If I can't change something, I just go with it. I've lost a lot but gained a lot too.
Well, that was an interesting illustration. I've just walked down town with backpack and stick. Took it slowly. Yesterday I could have marched it. A beautiful sunny day so all the casual how are you's were answered with smile and a positive comment about the weather. Then a friend in the Co didn't ask, just said I wasn't looking good. I smiled and said that good friends were allowed to say that (in fact another good friend had said the same earlier up at the house) and that, yes, my heart wasn't feeling terribly good. I'd needed a hand lifting the shopping basket onto the counter, much to my surprise, and set off slowly back up the hill. A local taxi driver stopped when I was less than halfway up and ran me home free of charge. My friend asked why I didn't have a concession card for the bus, to which my reply was that I wasn't disabled enough, look young and fit (usually), and my condition was intermittent. I wonder if I should try and get one?
I'm struggling too, I've got several niggles going on and soooo much bloating (I barely saw me in the mirror when I got up). On went the concealer under the eyes, a little tinted moisturiser on the cheeks and some mascara, hides the worst from others for me.
Take care and give yourself an easy afternoon after all that effort, some days we just have to obey the body rather than our minds.
It's a sunny dry day in between endless wet windy weather. I'm going to have to go outside and do some work in the garden. Only another hour of daylight so I can't overdo things Much! In the end, 'heart said no', so I stayed in and did a traybake!
Part of the problem is that we all have a condition that is rare and few people (including doctors) have any experience of that. When I had shingles half the village seemed to be queuing up to sympathise and share their aches and pains, and now I'm in a neck brace the same thing is happening again. Visible or common is understandable, but rare and not obvious is not. Taking steroids is also a problem as they do make us all look fairly 'well', even if rather red. I always say "doing OK, thank you" if I'm asked how I am as that is fairly neutral and open and isn't too off track even if I'm having a bad day!
In one of yesterday's papers someone said something like "I have an incurable disease, but it is manageable" which summed things up pretty well. But again it's not something to say in the street... But we all have the same problem and at least we all understand each other!
Recently, I have been saying 'I'm doing better than some people my age who don't have vasculitis' because it's true, in some cases and because I don't want pity from everyone all of the time.
I hope you heal quickly and get out of you neck brace soon. It is nice to read you have a good support network around you, it must be some comfort.x
I think you have a really good point there, Bronte. Some people only ask so that they can share their illnesses with you! I'm wary of that now. Unfortunately a neck brace is pretty obvious, as is my stick when I need to use it and such things seem to make you public property, rather like being pregnant when everyone assumes they can ask really personal questions and give you the benefit of their experience! I do get really cheesed off when I'm told how I ought to be feeling/will be feeling by someone with a 'condition'.
In the past when asked how are you? I started to reply I'm ok but my little demon is a pain! That always gets a smile probably because the person asking doesn't know how to respond.
I was a health professional and started to notice problems following two very serious admissions to hospital. The second admission was when I was told I had CSS, I had never heard of it and I was terrified. After the ward round the sister gave me a printout of the illness talking about care upto 5 years. I had decided that I had 5 years to live and on my first night home my husband and I wept in each other's arms. I had asked my manager not to reveal my diagnosis to my colleagues as I had to get my head around it. I was off work for 6 months and had to have a meeting with occupational health HR and my manager, I couldn't believe my manager, who I once counted as a friend, turned on me instead of being supportive she failed to understand the complexity of CSS and asked if my phased return to work could be taken during my annual leave! I had many periods of absences and each return was getting harder. She bullied me saying my level of work was not acceptable at this time I was told not to do baby clinics due to the risk of coming into contact with children with chicken pox. As I was not doing the full workload I was given a different load which she moaned about every day. I had a meeting with the next line manager, she agreed to move me to a different area I was so glad and slept so well that night. Alas it was not to last and again I went to the senior manager and again offered a move to a different department at this point I had managed to work from but that was to last three days when she pulled back into the office with the senior manager permission. Eventually the manager was moved to another area and I was to learn the 13 episodes of bullying had been noted against her. The next two managers were great and the bullying manager left without giving notice and the whip-round for her present was very poor. My health condition continued to be poor and I was eventually pensioned off and since then while my health has not improved I have enjoyed not working. Now I help out at our local school and read with the children, sometimes. Help with their artwork and recorder lessons. I love it and I'm now available to play with my 4 grandsons. Is hard when you are in the middle of the mess to find a way out but it's there, just hang on in. Other people are out there to help use them. I wish all people with Vasculitis to be as healthy as they can be.
Thank you. I really appreciate your story, things must have been tough for you, but I love the positive ending. Here's to happy and as healthy as possible.
Well Rasp today I have taken a leaf out of your book. I went to get my hair coloured ( fed up of the grey ), my eyebrows done and bought some make up!
This was partly brought on by a phone call from my boss yesterday informing me that I will be dismissed from my job on ill health/ capability grounds. Whilst I knew this was coming it was a shock to hear someone say it out loud. I figure the only thing I can do is make Lemonade from the lemons that life has given me and try and turn this into something positive.
If this illness has given me anything it appears to be a resilience that I would never had thought possible! 😄
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Oh my, Keyes. I hope the new hair do and make-up gives you a lift. I understand what you mean, when something seems it might inevitable, it's still a shock when when it happens.
This is a new opportunity to change your life and I think you'll be making great 'lemonade' for a long time to come. Good luck
Reading this thread a bit late but would add - when asked how I am I respond with - "I have good days and bad days. Depending on their body language or verbal response I can say this is a good day or a bad day and take it from there. The one thing that frustrates me is that "deer in the headlights" look that says (unspoken) "you mean you STILL have that"
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Moving on, how?
Hi everyone I'm new here I need your help
Does anybody find lack of understanding difficult?
