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

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.

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

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