28 and need a knee replacement fustrated

mille

Hi everyone this is the first time i have used a forum.I have danced fir a job for 8 years
i had to stop due to arthirits under my knee cap. I have been told i really need a knee replacement . I wont beable to get this done untill im older.

I struggle to be on my feet for long. Iv had to change my job and my.whole life stlye.

I have finaly cone to terms with my life style change and job change.

But what upsets me more than anything is that people dont understand what its like. Family seem to think i should just get on with things .they dont understand that when.it gets bad i have to sit for a few days .they dont supports me and it hurts me.

Does anyone else have the problem of people not understanding?

stickywicket

Hello and welcome to the forum.I'm sorry to hear you've had to change your job due to the arthritis (but well done you for coping with the change) and even more so if you've been told you need a knee replacement now but must wait.

I had RA at 15 and you are quite right. People don't understand, especially when you are young. You look OK so they expect you to behave the same as everyone else. Now that I'm in my 60s and look far from OK I get far more understanding than I did when I was young and in more pain :roll:

You could try downloading some of Arthritis Care's publications to show your family how things are. And / or you could google The Spoon Theory. I think it's really written more for those with a debilitating disease such as an auto-immune arthritis, as the fatigue can just wipe us out let alone the pain, but it would give some idea of what you're up against.

We do have several younger people on here so you know that we, at least, do understand and can empathise.

As5567

mille wrote:

Hi everyone this is the first time i have used a forum.I have danced fir a job for 8 years
i had to stop due to arthirits under my knee cap. I have been told i really need a knee replacement . I wont beable to get this done untill im older.

I struggle to be on my feet for long. Iv had to change my job and my.whole life stlye.

I have finaly cone to terms with my life style change and job change.

But what upsets me more than anything is that people dont understand what its like. Family seem to think i should just get on with things .they dont understand that when.it gets bad i have to sit for a few days .they dont supports me and it hurts me.

Does anyone else have the problem of people not understanding?

I always have problems with people not understanding, I'm in my early 20s and cant even count the amount of people I've had tell me to "just get on with things" "you will be ok in a few days" and so on. I really do feel that arthritis needs much more public awareness, as it currently stands the majority of people think it only affects old people. And they just think that its a bit of pain that can be fixed with some pain killers, when I have educated some people about my condition and the medications that I have to take they are usually lost for words. it's sad to say but I don't see this changing anytime soon unless there is some huge world wide campaign telling everyone the details about Arthritis in all ages of the population. it's like so many other diseases where people look fine from the outside when sat down etc but feel awful on the inside.

I'm lucky in a way that most of my family have seen my grow up with arthritis since and child so they are very sorry. I'm sorry that you feel that nobody understands your condition, stickywickets suggestion seems like a good one, hopefully you can educate them to understand.

hileena111

Hi
It is an invisible illness until you use a walking aid or something like that and when you are so young people just don't understand.
I'm in my 60's and I don't want pity or sympathy but understanding.....that's all. So I can only guess at how you feel being in your 20's.
As for a worldwide campaign.....Do either of you belong to an arthritis care branch? If so you can volunteer.
Its far from world wide but we are trying.
I'm what's called a "Peer Support Champion" {North East England}
A couple of us have a table at a large hospital twice a month, we have bits and pieces on it....eg pens key rings etc. We also have information about arthritis...lots of different booklets and people come up and ask questions and we chat to them. We cant advise them about meds but we might tell them about what we take and how it affects us. It doesn't matter what they ask we can usually find an answer......if we don't know it we have a large file where we can find a number to direct them to.
It amazed us how many people thought they were the only ones with arthritis. We are spreading now and hve a table once a month in a Walk in Centre, once every 2nd month in a leisure centre, then we have a few "one off's" like 3 different flu days in different areas. So gradually we are educating people....very gradually
I'm sorry that both of you have had to find us at such at young age
Love
Eileen

AmandaJones

Hi Mille, I am not as young as you but compared to other arthritic people yes, I am. At the age of 35, I have hip OA and now it is spreading to my knees. I know the future of it; will be knee replacement in time to come. But I do have family support and a wonderful husband, which makes me sail through difficult times like flares. With the help of meds (hit or miss) and kind, compassionate coworkers, I am still able to work and be productive.

It can be completely frustrating to manage this supposed to be "old people's" disease and too many people still don't understand. Having good friends and family around to provide support and a good doctor can make a huge difference. Keep light-hearted attitude. SW has given a very good suggestion to give a copy of a simple guide to OA, to your family members in hopes to better help them understand. You can always vent out your feelings to fellow arthritic people here on the forum and remember, we all understand you .

Amanda.

barbara12

Hello mille and welcome to the forum...
Like the others have said this is an invisible illness,I really do feel for you at such a young age..I do hope you have good pain relief..and have you had physio to keep those muscles in good order...till the time comes for a knee replacement..you now have us lot to talk to..and that will help in its own way...x