Arthritis Action

How do you make people understand?

Hello,

I have been struggling with hip/knee pain for almost 10 days by now, cortisone is not being that helpful and I think I am only alive because of Aspirin.

Anyways, I feel like it's extremely difficult to make people understand that despite the fact I am walking around, going to school etc. I am still in pain. They just don't get it. Maybe it's because I am not very vocal about my pain (never have been), like I don't go around whining how much it hurts, I don't cry, nothing. I just suffer in silence and if I wouldn't tell them, people probably wouldn't have guessed I am in pain.

Also, making people understand that it's not just a little bit of pain that goes away with a bit of Ibuprofen/a warm water bottle/cold pack seems impossible sometimes. They may not say it, but from their faces I can tell that they don't really believe me.

Do you have the same problem? Should I just let it be? Any ideas how to make them understand me better?

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You have answered your own question. You suffer in silence - why ? People are not mind readers so will not be understanding. I suffered in silence for 3 years with my knee and full leg brace. Had a T K R in the end and was the best thing ever. People are ignorant which is no fault of their own so educate, enlighten, explain. You'll be surprised that their reactions. Take care xxxx

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Sorry to hear that you are having so much pain. Constant aching pain can really get you down and make you feel quite alone.

Pain is such a personal thing, everyone's pain is very different and it is hard to understand exactly what anyone else is suffering.

No-one wants to appear as someone who is constantly moaning so many people keep this to themselves.....

...but unless people have suffered themselves, they won't fully appreciate how you feel.. ....

Is there a local group near to you that you can join of fellow sufferers who can share their experiences?

I'm guessing from your post that you are young as you say you are going to school.....there are groups out there specifically for your age group.....

arthursplace.co.uk

Is one of them...

Good luck with your search....

Margaret

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I feel exactly the same, people really don’t have a clue and you dont want to be full of doom and gloom or people just won’t to be around you, that’s the reality. Have a look at this site through Facebook - key in rheumatoidarthritis.net into the search box, then look down a couple of posts rheumatoid arthritis.net/living/community-thoughts-wish-more-knew the link was added 2 it 3 days ago if you scroll through you will find 4 pages of clear descriptions of what it actually feels like to live with this disease, symptoms, treatments etc ... it’s the most descriptive explanation I’ve seen.

I have printed it off and am going to give it to all my friends and family to read. Hope this helps 😘

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I feel for you as its a really difficult illness to get your head round yourself let alone for someone who doesn't have it. Before I was diagnosed only 6 weeks ago, shamefully I thought arthritis was an old persons issue and was just a little bit of stiffness. I had NO IDEA!! When I watch the advert for Arthritis on TV it really upsets me BUT I think more of these should be shown to educate people of just how bloody horrendous this disease is. X

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I have been suffering in the same way now for years. My pains started in my knees but now goes to my hips my ankles and lately my back. I take morphine for pain which has been increased on several occasions and I can get nothing done. I lie in bed some nights and just cry because the pain is so bad I would like to have my legs amputated. But when people see me they don’t see what pain I have to live with I walk with one crutch as I do have Osteoarthritis in my hands as well recently had further surgery on left thumb. I had a knee replacement privately 11 years ago when I was with my now ex husband but now cannot get anything done to help just have to keep taking pills and live with it.

If yours is getting worse I would certainly push to have some checks done to see what is causing the pain such as x rays, MRI, blood tests etc. Good luck I hope you find some comfort soon as it’s bit fun being in pain.

Jackie

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I understand where you are coming from Cherry. I hate explaining to anyone what is wrong with me as sjogrens is a condition few have heard of and don’t really wont to know about. Its good to have a site like this for support as you can complain, ask for advice or just tell people how you day has been . I hope you are able to get things under control, do push your doctor for a scan or orthopaedic opinion to get to the bottom of what is wrong . Best wishes xx

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Understand totally. It's not good to go round moaning cause people still don't believe you if you are getting on with things. It seems unless you are in a wheelchair or bedbound people just think you are moaning. Unless you have this desease you will never understand it. It's sad but you just have to carry on. I guess going to some sort of group may help . I have friends who I know say behind my back it's not as bad as she makes out. That's because I'm a fighter and take naproxen and painkillers if I have to do anything. Then they want you to drink and you can't so you are boring. All I can say is your true friends and family you can explain to and the rest you have to leave to their ignorance to the problem . Hope you get some help and stay strong x

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So, I have been to my GP again, he will send me to an orthopedic specialist who will most likely tell me to go to physiotherapy (which didn't help for most of my childhood) and it's just so annoying when people refuse to listen (including medical professionals). However, I will go to the hospital next week for further check ups (organized that myself). What makes it harder for me sometimes is that I go to boarding school, so I am constantly around people and can't just stay home from school when I am in pain and there isn't much privacy and quiet time either. This is partly the reason why I will return home and go to the hospital there; it's gonna be a 9 hour bus ride and I hope I will survive somehow, despite all the pain :/

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Do you have a pastoral care worker at school or a school nurse you can explain how you feel to?

They may be able to talk through a solution so you do have some privacy and quiet time when you need it....

Best wishes

Margaret

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Bless you cherry, my heart goes out to you as a young person living with a chronic painful illness. Hopefully you will get the help you need xx

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