I don't go on about my illnesses and try to ignore them as much as possible but when I do have to mention them I am obviously not believed.
For example last Thursday when my friends picked me up for darts (they beep me and I then have to go out of my flat, down some stairs and up a long path) if I am not there in 10 seconds they beep again then ring me. I told them again calmly that I can't run because I have COPD. One of them said impatiently "Omg how many times have we heard that?" This is usually followed by "wait outside for us then". I explain that they are sometimes late and it is too cold and wet for me to hang around outside. And I get told thats my problem.
My youngest sister claimed today that she has worked longer than I have. (she hasn't). She is starting to treat me with the contempt she usually reserves for my other sisters who havent worked much because of laziness and later on illness. She treats me like I haven't worked a day in my life and I am now a scrounger because I can't get work. When I pointed out that I get DLA for depression she was most put out and said she gets nothing and gave me the impression that her taxes were paying for me. I said that If I never work again I will never get back one thousandth of what I have paid into the system. I am fed up with that attitude! Thats all I ever seem to get from everyone I know..
The Jobcentre have now sent me to the next state of unemployment 'prospects'. The overwhelming attitude is people like me need more help to find work. And looking around at the others I could see what she meant. I thought OMG what am I doing here? I don't need a good cv or an IT course I have the skills and just need a job I can physically do.
Even though I have restricted hours I can work and limited work I can do (nothing physical) I still have to apply for 3 jobs a fortnight like everyone else. Thats not fair.
I have no support or understanding at all from anyone I know and I feel very alone and isolated.
The only answer to get back my feelings of self esteem and self worth seems to be to ignore my illnesses - after all no one believes me and just to get any job regardless. If I have to work my self into an early grave - then so be it. I would rather that than lose my confidence and start believing all the negativity around me.
At least I would be able to afford to turn my heating on. 30 pc of my income goes on fuel.
I know everyone here understands and is supportive and caring which is fantastic but I need people face to face not just on line.
Does anyone else have this problem and how can I change it please?
Unless someone has gone through it they cannot hope to understand what it's like, and most people simple don't want to know unless it's going to affect them in a big way, like partners/carers.
My wife, a professional carer, scoffed for some time as if to say I was playing the wounded soldier too much. But, she's seen a lot more of me in a bad way since then and has come round to some level of understanding, even if she did say I deserved an Oscar of my performance when the ATOS doctor came - I wouldn't mind, but I wasn't putting anything on at all, I was just natural.
Families and friends can be the harshest critics, yet they don't know half the story. The jobcentre staff are told what they must do, and that means trying to fit round pegs into square holes a lot of the time. They are pushed to bring figures down, even if that means someone is placed in an impossible situation.
I've no easy answers here, I've tried 'educating' those around me, but they don't understand what I'm suffering or how difficult things can be. I had thought about writing something that I could give to people, but it could be an extensive document !
Yeah you right Gordon. Its bad enough friends and family not understanding but when the state doesn't either its even worse. I must say though that the Job centre staff have been mainly supportive and the stupid rules aren't their fault.
Gosh I really feel for you, its a difficult for people to understand what Copd is and how it affects us and also depression. because they can`t see it they think it is made up but would`nt wish this on my worst enemy. My hubby has had his head in the sand over my copd and it is only now that I am having ambulatory oxygen that he seems to realise I am ill and not going to get better. I had to give up work as could not manage it any more (care work in extremely busy nursing home) but I am lucky in that I am retirement age and have only had to wait a few months for my state pension I do hope things get better for you, don`t give up hope and thinking of you..
I really feel for you and i know exactly what you are going through, and i am afraid to say this but people who haven't suffered from shortness of breath will not understand.
In my view the contempt that can go with this disease, stems from peoples belief that it is self inflicted due to smoking, and i am pretty sure thats why we don't get the understanding
that we should have,All i can say is if you are feeling down and need to talk to someone
try the British Lung Foundation, they have a help line, and nurses who will speak to you.
As for so called friends who are perhaps not being as supportive as they good be, then
maybe they are not true friends at all !!
Keep your chin up, and don't let the beggars grind you down.
Yes "Fontleroy" your right, - COPD isn't like wearing a plaster round your leg etc - for all to SEE, where the "Disability" is obvious, people see us puffing and blowing going up a hill or stairs etc and just think its natural and put it down to getting older - you can't win ! and,as you say the " Self Inflicted Brigade " don't make it any easier, where does it all end ? - some might say to a Jogger - "If you had'nt have gone out Jogging so much, you would'nt have had your Heart Attack " !!! , and your last comment about "Friends" - how much of a TRUE Friend are they really when they either challenge your illness or blame you for it ? -
I'de say to " Hypercat " -" What goes round, comes round" when her youngest Sister, and so called "Friends" fall to an illness, as they surely will, such is the nature of life, they might well find they too are short of those who sympathise etc , and the "Penny might drop" on how they treated you when you most needed help and understanding etc., so in the stealing hours of time - Good may well come out of all this in the end, so
hang on in there " Hypercat" not everyone will be "False to you " .......my good thoughts are with you - Vittorio .
I too can empathyse with your situation. The depression is real as is the disease, unfortunately the attitudes of others pull us down or lift us up.
Unlucky..I have COPD, Lucky..I have friends who lift me up. Are you able to get a ground floor flat? Not for the convenience of your 'friends' but for you. I had to fight the locl council but in the end I won and the difference is amazing. I know when there are so many problems we spread our minds to cope with them all and when you are low it all seems too much. We may be online and unable to physically give you a hug or hand you a tissue but it is a place you can give vent to your feelings, learn more about how to achieve and cope with what we are all are going through or will go through. Unasked for advice? Concentrate on a ground floor flat and don't dismiss anything not in your current location. New home, maybe new friends worthy of the title.
Prefer not to comment on the family attitude, I am sending an arm round your shoulders and a hope that you keep in touch with this 'family'.
Thanks for your lovely comments hajoed. I do feel a bit better when reading my posts - a problem shared is a problem halved. It surprises me that so many of us have families that don't understand or seem to care - I was starting to think it was my fault my family are like this. Now I see its not my fault its them.
I own my flat love and it isn't the stairs that are the problem (at least not yet) its family and friends attitudes. I don't want to be on ground floor because I live alone and feel safer on 1st floor.
Sadly this attitude is all too common. I had the same thing with my sister! I now get the same comments from my daughter. I have explained how asthma affects you and how you can be fine one day then feel like crap the next day, but I still get comments. It gets me down as I shouldn't have to justify myself to anyone!
If you have letters from your consultant or respiratory nurse then show those unbelievers them. If they still don't believe you then that is their problem and not yours. If you go to a Breath Easy group then take your sister there so she can see what goes on.
Thanks Puffthemagicdragon. Never been sent to a consultant or been in hospital (yet?). Its a good idea to suggest that my sister comes to breathe easy group with me. I do have lots of bumph from BLF so I am going to give her some to read.
I understand how painful asthma can be, I manage it much better now but before I was given the most suitable medication, I'd have some days when I was feeling really ill & literally couldn't move a finger without my asthma being set off. I'd feel like there was an elephant standing on me! It sounds daft, but if you continue to tell your family and friends about these conditions then eventually they should believe you. Take care x
Hypercat - think that is a fairly common reaction until people see what we are like and how little we can do. When friends are coming to pick me up, I ask them to text me or ring me (two rings and I do not pick up the phone, so it costs nothing) when they are about 5/10 minutes away and that gives me time to get ready and get outside.
Hi i understand ur problem from both sides my mum had copd, passed away in 2007, the next yr i was diagnosed, i must admitt at first with my mum i didnt get it until she explained her lung capacity to me and how little she was working with 15% near the end! then it hit home, she had bouts of tearfulness and now i seem to be a carborn copy of her! As some of you know i have bad bouts of gout both in foot and arms and spinal problems to basically everything my mum had i have! and yet i have 5 children, 4 in there 20s one is 11, and my dad brothers and couple of friends who still do not get i cant do everything! typical example is went shopping with my dad as car wouldnt work, he got shopping as well n left me to pack his shopping while he stood at till with his payment ready! 2nd shop after i complained to him i was sore n out of breath, he helped pack my bags but full to brim so i couldnt carry them with one arm ! My older kids dnt get why i sleep so much or help out around the home (4 STILL LIVE WITH ME) and like u friends expect me to be able to walk up an incline at their speed and run around like i use to go to places with a chest infection etc!
Lol sorry for the rant one of them weeks, maybe the only way is for copd nurses to speak to these people and make them aware! i know there are booklets but no guranntee they will read them!
at least we all have eachother here hun whenever we need to let off steam!!!!
Oh dear Junegirl that must be really annoying for you. Kick out the ones in their 20's or stop looking after them. They might learn to appreciate you then!
Hi hypercat, hope ur feeling better today, i would kick them out but catch 22, cant pay my mortgage if i do and one of them 22 yr old is disabled, having worked in care industry all my life wouldnt put him in a care home as dnt trust many carers, so just have to muddle through, my eldest did though for first time ever cook sunday dinner yesturday so hey maybe theres hope for us all!! xx
I have had the same treatment from my eldest son, I have suffered with chronic depression for years and he doesn't want to accept that his Mum (who incidentally has been amazingly strong for years), sometimes can't cope. I had Bronchitis 5 weeks ago and he didn't bother to come and see me. Great eh? Yes its hard, surround yourself with people who enhance your life and show some empathy towards you. There are lovely people on here, I know its not the same as having them close to you. However, its a tremendous comfort to know that. Take care Lizzie xx
just had a thought have you got a Breathe Easy group near you? If so, it would be good to join in, the one in Cardiff is great and people are lovely, basically because everyone understands, which is the crux of the matter.
hi Bev as you know i put message on here with the same problem and you sent me your support along with many other wonderful people and it seems from the replies that most people with copd are suffering the same ignorance of family and friends and lack of understanding, its hard enough to cope with the affects and come to terms with this ilness as someone said its the silent /invisable illness like you and others i find it the most difficult that friends and family can not understand are accept this illness . since your messages of support and many others i no longer feel alone and i feel more able to move ahead with my life i managed to get a ground floor flat 2 months ago and it makes life a lot easier so Bev why not try for one yourself and as regards the job centre i think you should appeal that you should be on ESA employment support allowance its wrong to put you under the same rules as a fit able bodied person i know its hard to have the energy to fight these things but one at a time in your own time you are a star Bev you can do it keep in touch Bob x
Aww thank you for that bob. Trouble is I am not claiming ESA - I am usually fit to work but limited so don't think I would get it. And last time I claimed it for depression ATOS sent for me and I couldn't cope with 2 buses, a train and long walk so I went on JSA instead. Seems no answer really.
I think we are all stars on here and I am very glad my small contribution helped you bob. Onwards and upwards love.
I no longer say i have c.o.p.d. because people just don't get it. It sounds so harmless "c.o.p.d.". I now let friends and love ones know i have emphysema and this they get. C.o.p.d. is emphysema or chronic bronchitis, sometimes a combination of both. Maureen usa
To get an understanding of how copd people feel the physio at my pulmonary rehab group put a peg on her nose and breathing through a straw done a six minute walk Thinking of inviting family and friends for a walk with pocket of pegs and straws !!!
I have been trying to get my GP to help me for 9 months - I am told "there is no funding" for sleep clinics or a respiratory nurse. She just ignores what I tell her - has not even used an oxy-pulse meter on me - doubt if she has one.
Hi Bev, please don't ignore your illnesses just to accommodate others. You know how you feel and how things affect you and trying to get others to understand is an uphill struggle. If anyone asks what is wrong with Pete I say he has Sarcoidosis and chronic obstructive pulmonary disease. People like to know what these things are, or they think they do, but some don't really want you to tell them. Your "friends" could and should be far more understanding and caring if they are indeed true friends.
Do you have a breathe easy meeting in your area? or anything like that where you can be with like minded people who will understand what you are going through. Depression is very real for people with chronic illnesses and I wonder how much help you get with that.
I hope you can find a job that you can do without making your illnesses worse and your sister could try taking more of an interest in what you do. Family should also be more supportive but since coming on here as a carer, I do realise that is not always the case.
See if there is anything voluntary you could do ( I know that won't pay the bills but could be as well as a little job perhaps) just to meet people so long as it is not too physically demanding. A move to something ground floor would be good too as stairs are not what you need.
I do wish you the very best Bev and hope things work out better for you very soon. Take care and as bobless says, you are a star and you can do it. xxxxx
Thanks Sassy I am amazed how many families of ours don't understand!
I do need to do some voluntary work just to get me out doing something. Have put this off due to lack of confidence but must find the courage to do it.
When you have to fund your own healthcare with insurance then faking it is not an issue that we have to deal with in the US. Changes peoples attitudes when being sick pays against it being a cost burden on a family.
Looking after your health saves money so you do not pick up a cane anytime while you have a choice.
You put it into perspective moovin. I guess the only good thing about having to pay for your care is that people are more ready to understand.
At least here the welfare state is much more robust and I think we sometimes forget how people in other countries struggle. I would much rather have the NHS than not and we are very lucky here no matter how bad it seems at times. Take care.
hi moovin.i to have copd.the way the nhs is going over to your private system like medecade/medcare.in us.in uk we are not happy at all.as we were told by our mps nhs was safe in there hands one big con/.how much dose it cost in usa.stay well xx
Hi bev,
i'm sorry all this is happering to my family don't seem to have time for me so i can see
where your coming from,
chin up sweetheart,
rose xxxx
in reply to
Thanks rose - its not right is it?
Bev xx
Thanks very much for all your replies. As always I feel the love and understanding of all you fantastic people here. Most of us seem to have the same problems with family and friends and at least I know now its not just me!
Some friends have taken this on board but will try and help when they don't need to which I find annoying....So I guess you can't win can you?
My friends who don't understand are often very good in other ways which makes them worth it. The friend I mentioned is my bingo and darts friend and we get on fine usually.
As for my sister I don't have enough relatives left to fall out with her.. Best way is to ignore her when she starts on and try not to let if affect my confidence. I only see her usually once a week at my mum's care home and I try to keep on good terms with her because we sort out our mum together. And I hate arguements and confrontation.
But when I make my will (I own my flat) I am planning to leave most of my money to charity!!
I'm lucky. Family, friends and acquaintances all understand about my COPD. I tell them I have COPD then explain about the emphysema. Like maureenjjj says they seem to understand a lot better. No one I have told has disbelieved me yet. Even the cashiers at Tesco when I explain why I'm puffing a bit !
This is the problem with disabilities that cannot be seen. If you look healthy, people wrongly assume that you are. When you mention your ailments, people either think you are looking for sympathy or are a scrounger or tell you their ailments are much worse than yours. I do not know what the answer is unfortunately. I guess we should just be thankful that we can get out and about sometimes, and focus on what we CAN do. At the end of the day - does it really matter what other people think of you. I go out to a disability group and an art group and most of the members are older than me (mid 50's) and have various health problems. I think some of them think I am bit lazy (i dont make the tea/coffee very often) and I let them think this rather than explain the arthritis in my back is painful and the copd makes me breathless and the diabetes and thyroid problems make me tired. Better to be thought of as lazy than to try and explain health problems that other people are not really interested in. However, I can wholeheartedly empathise with your situation. Keep on smiling.
I love your attitude puppylover, you seem to be a person who is confortable in your own skin and not about letting anyone get you down. God bless. Maureen usa
my answer tho it may sound cruel is to cut off anyone that gives you negativity. You dont need them in your life. If you feel the need to work try the charity shops, they are always needing volunteers, my way of volunteering is to make dolls from scrap fabrics then give the finished dolls to my fave charity. Its not the answer to everyones problem but we all need to find something positive to focus on. Any extra support is right here on this forum with all these wonderful folk who take the time to boost people and try their best to help. My thanks to all those that have helped me in the past. Much love and hugs to you xx
I sometimes think that they are the ones in denial and they need to get a grip and see what is right in front of them. What can you do indeed? Take care Ali. xx
When I read your story I felt for you... Sadly I went through this with my ex & at present as people don't understand what living with your illness feels like,it feels like they are in denial & that they can not give you the time of day...
I hope you have some support outside your home life.. I have only just discovered there is support after attending a course in my area...
Choose some new friends the negative stuff is holding you back while you can not choose family you choose when to put them in your life - the smart choice is less negativity.
Omg! it seems like families everywhere can be a right pain. Got my fair share of friends but they either working and/or have families and don't have much free time. Not many people like me, single no kids etc. I tend to be fitted into their lives when they have a free moment. Their lives are busy unlike mine. But I guess I have only myself to blame for that. Sigh...x
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