How do you have patience for other people who don't understand?

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keiraH

05/01/2023 at 02:50

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keiraH

Last activity on 05/01/2023 at 02:39

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Hi everyone,

My husband lives with chronic pain and having watched what he has been through, I understand him and his struggles. I am always supportive of him if he takes longer to do certain tasks, or does not have enough energy to do things he promised to do. I understand why on some days he can't do what he did the day before.

I'm struggling because for years I've been watching people give up on him. He loses friends because he doesn't have the ability to be who he was physically before. I see people out in public who push by him and lose their temper. Some of his work colleagues get it, but no one can really understand until you are or live with someone who suffers from chronic pain.

How do you have patience for these 'outside' people who don't have patience for the chronically ill? I find myself snapping at strangers because I want. them to be more considerate. What do you do to calm yourself? Do you ever try to "teach" others about what's going on inside you/your loved ones?

Any advice (or perhaps other ranting stories) welcome :)

Keira

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rosesunday

07/01/2023 at 16:51

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Hi I know what you are going through,I have a son with the same problem and its HELL I have been looking after my son for the last 25 years, this year its been so bad I don't know what to do, he is in such a bad way right now he has not even opened his Christmas presents I have been trying to deal with this for what seems like for ever with no help or rest I finally got him to the doctor a few months back, and told a new doctor what happing with him with very bad pain, sweating been hot then so very cold very bad head aches, and his mental health is so bad he had been screaming out in pain throwing things in his room, and that he even through his mirror wardrobe through the bedroom window. The doctor then said this is to much for me to deal with I will have to take advice and get back to you, he did not even right anything down or take his blood pressure or temperature this was about 4 months ago and we are still waiting for him to get back to us, its no wonder my son has no faith in the doctors, every time I have said I will ring the doctor to try to help he tells me not to bother they don't care or help. A few months before this I tried to get help for him and rang the doctor and he just said if he does not ring him self I can not help him. How are we able to get help when my son is in no fit state to help himself. He has tried to commit suicide in the past, how the hell is he going to live like this much longer.

How do you have patience for other people who don't understand? https://www.carenity.co.uk/forum/other-discussions/living-with-chronic-pain/how-do-you-have-patience-for-other-people-who-4927 2023-01-07 16:51:31

GloriaG

09/01/2023 at 00:45

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GloriaG

Last activity on 28/02/2023 at 00:50

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Hello, I am going to be one of the ranters for a moment. I am one of those who are suffering from a rare and chronic disease and in constant pain. Because I live in a distant, Asian country it is almost impossible for me to get the care I need. My family live thousands of miles away but I do have a wonderful adopted daughter who lives with me here, I adopted her from birth when she wasn't wanted by her birth mother. She is my prime carer and an angel. She has managed to gain two University degrees while still trying to do her best for me also. I was a nurse/practitioner for 25 years, running my own clinic with a staff of seven wonderful people. I am now confined to bed most days but can walk a few steps to the loo with her help. On a good day I can cook a meal for us both but can only stand for a few minutes. The clinic has to continue without me and is still a success. My life has been taken away by this disease and I feel useless. It will take me a long time to type this as my hands do not work very well so please forgive any mistakes here. So I completely understand how carers feel when struggling to cope with a person like me. I feel guilty. I feel inadequate. How do you cope with people like me. I send my love to anyone who is putting their life on hold to keep trying to help us. You are angels and I love and thank you for what you do. The tears are rolling now, so I have to stop and collect my thoughts. With gratitude and love. G

Rahul.R

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09/01/2023 at 17:52

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Rahul.R

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Hello @keiraH

How are you and your husband feeling today? :)

Thank you for opening this discussion. I am very sorry to hear that your husband has to face this type of treatment. Chronic illness is often misunderstood by many people and sometimes it is very difficult to understand the scope of its effects. The outside world can be cruel sometimes, but it can also be capable of magical moments. So do not lose hope, but believe in the goodness of the world, even though the world may require time to learn about it. The people who do understand will be the ones who will stick by through thick and thin, and being patient can be frustrating, but that's how life is sometimes.

I shall tag a few members who could relate and share their own experiences-
@Yank34 @mikebpool @richard0804 @robjmckinney @lacemaker @JazzyC @Pippadog @lesmal @Raythebaker @sophiesmum @BossyFlossy @Marion47 @Faithkitty @Lou1980 @nandaska16 @LyKon82 @MargaretP @missytb

What do you do to handle yourself in these kind of situations? How does it make you feel? Do you think there are ways that people can be more informed and caring?

Let us know in the comments down below!

Wishing you a great week ahead,
Rahul from the Carenity team

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Yank34

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09/01/2023 at 19:38

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Yank34

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@Rahul.R I'm not sure if I have any "words of wisdom" for any of the contributors "here" but from personal experience and trying my utmost not to be too cynical, individuals are all 'different', possibly because of their own unique experiences which may not include any knowledge of chronic illnesses? I strongly believe empathy is the greatest gift any of us can share with one another but without having personal knowledge of any particular phenomenon, how much can others empathise with those/us who possess 1 or more chronic illnesses? In an ideal world, nursing, medical, educational, social service institutions etc. should naturally possess empathy but often wonder with present, increasing financial/staff shortages as well as so many people having such busy lives, few people are available to assist? Perhaps we need to try to focus more on accepting our lives as what they are & look within ourselves for greater understanding & greater strength as well as continuing to live in the hope that our closest families/friends probably understand more about our chronic illnesses than anyone else?

I also find myself increasingly struggling more with some of my chronic illnesses - MS, widespread osteoarthritis, asthma etc but very fortunate to have a small, close network of friends that not only understand my limitations but willing to assist if/when I reluctantly accept this. Hopefully, a positive suggestion may be to try to find any online organisations/support groups for your particular or similar chronic illness? I've just conducted a quick internet search re: "Befriending Services" and have found quite a few possible sources of "listening ears and friendly faces" for 55yrs +/or disabled people and although some of these are UK national organisations/charities (e.g. Age UK) also found others that are more locally based. I also found befriending services for younger people. I try to be "here" as often as I can and keeping everything crossed that everyone finding themselves in needing this support will soon be able to access it. Sending you all my very best wishes x

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Ann

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09/01/2023 at 21:15

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@Rahul.R it’s often difficult having an invisible condition. All I feel I can do is try to educate people and accept that we are all different and they may have their own hard paths to walk

lesmal

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13/01/2023 at 15:38

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lesmal

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@Rahul.R Thank you for including me in the conversation. I do not have much experience on the fact of living with someone in pain, but know that with epilepsy I have had to make myself go onto social media and find others with a similar health condition(s) in order to empathize with them, and help guide them through living with the same experiences. Doing searches on Google has helped me find people, organisations and more to contact in this regard.

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robjmckinney

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30/01/2023 at 12:59

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robjmckinney

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@Rahul.R Yes, an occasional bizarre behavior/event occurs like someone blocking the way on the pavement while riding my mobility scooter. A foreign woman who was not aware of the Law in respect of mobility scooters. But these situations disappear when I get to my feet and growl a little, females tend to retreat. But these everyday silly events are so common today as I take my grandchild to school. The price of mingling with the human race again after isolating myself quite well. But that is life now, I struggle at the till in supermarkets and take to long, fellow customers complain but there is not a lot I can do. I must admit I do recommend that we take the debate outside to dicuss it in a civilised matter in the carpark, but I am getting a little old for such actions. My wife prefers to escort me shopping and has had strong words with others on my behalf on occasion. But impatience with people is getting worse and unless we where badges or something I doubt it will change. When they are informed I am a crip they generally calm down without going to a second stage.

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