I think there are a lot of ways people can respond when you discuss having a chronic disease with them. People have varying amounts of empathy, they have a varying ability to understand what it means to have chronic pain, and they have a varying ability to tune out their own problems in order to listen to someone else's.

If you think about how hard it is for you to understand and accept this disease, and you are the one experiencing it every minute of every day, try to imagine how hard it is for people around you to understand what you're going through, when they don't feel the symptoms. To each person, the most pain they've felt is the worst thing they've ever felt, and many people have dealt with very little pain.

It is very important for you to have a place where you can talk to people who understand what you're going through and can truly feel your pain. A forum like this is an excellent place for that. You might also consider speaking to a counselor, mentor, or pastor to help you deal with the many, many physical and emotional issues that come along with RA. That being said, I understand the desire to have loved ones and friends be sympathetic and listen to your troubles (my husband understands that I have a disease, but he seems offended when that disease interferes with our personal or intimate life), but it's important to be patient with others and try to understand their limitations. It might even be helpful for you to try listening to their problems if they want to talk about them--you have probably developed a lot of empathy, and you could support friends and loved ones. They may even be feeling the same as you--alone and misunderstood. Listening and sympathizing could lead to sharing your own experiences with chronic pain and life-changing diseases and might lead to a stronger bond.

Other people also may have no idea how to talk to you about it. They may feel uncomfortable asking you how you're doing, especially since you admit you've avoided the topic in the past. One way to open the door to a conversation is to show that you are learning to accept the new limitations of RA, maybe even by making a joke about it or, if it's a close friend or family member, maybe say that you would like someone to vent to and would they mind to listen? (but try not to let that venting be about how you feel they didn't listen in the past).

And in the end, some people are just unable to get past their own problems long enough to listen to someone else's. If those people are playing a game of one-upmanship about whose problems are worse, it may be time to quietly stop spending time with them, if possible, and start spending more time with the people that make you feel accepted no matter whether you are well or sick, happy or depressed.

Take care and know that you are not alone.

I find that some people like to discuss medical things, and some people don't. That's what makes this place great. Everyone here is interested in medical things.
I talk to much about medical things because it's all my life seems to be about, but I try really hard to not say more than a few words about it to people who prefer to not discuss health issues. This can be annoying to me, or even hurtful, but I try to be sensitive to others discomfort, and give them a chance to talk about the things they like to talk about.
But not being listened to at all is very painful and hard to deal with.

i like your vantage point inkjoy.

m06455 for my birth family, I supply honor responsibility and respect and traditions related thereof, to a point, but I don't get any excess of joy ... :) and that would include an over share, a regular share or an under share of my medical journey.

for that i go to my intentional family friends that stretch back 30 plus years that we do for each other. I am a safe haven for them, and they are for me.

if you notice how it sucks to talk about religion, money, and politics at family gatherings? you can add medical to that and you have a sure bet most of the time :)a

who supports you now if family is not fitting the bill? I see that you are age 29. do you have a best friend or two or three also in addition to family? do some of these best friends also have challenges? I bet you can cross share and cross do for each other if so.

Sorry you are in your 20's with this crappo disease and that you feel your family is not present for you.

we have a lot of 20 somethings on this board. I hope they all answer you. Frankly, their perspective is more valid as being in the decade that you are in, folks are still sometimes still immersed in their birth family just due to proximity and age.

Depot

Thankyou all for your advice and information....I really just needed to see if others were experiencing the same sort of thing,depot blue I wish I was 29 but I'm not. I am39. I better check my profile and correct it. I was 32 when I was diagnosed. Thankyou again to all of you.

I think it takes some people out of their comfort zone.
Unless that person is the type that just likes to control the conversation. Lots of those out there. It's down right rude.

Understanding goes a long way. When others engage enough to care, learn, support it helps a lot. When it's the opposite well it can be a little hurtful.
Yet there will always be people like that around.
I think we all have a couple in our lives.
Then there are those that want "heal" is. If we'd only take their advice we'd be fine. Not sure which is worse really.
I am sorry you have to deal with it at all. Not comfortable to be brushed aside.
Sammy

Thanks sammyo1. Talking and sharing this with all of you helps.

yeah 6455 my family does not do maladies be it acute, chronic, hospice, death, birth, or anything in-between. We can't discuss politics at gathering. religion at gatherings. we have folks shoved back in closets at gatherings. no one can have a drink at a gathering. no one can tell a joke at a gathering. we are like a lot of wicked fun. In no way would i bring my journey to them. I know exactly how you feel. I don't feel the lack though because i fill the bio family gap with people that I take care of when they need it and they take care of me when I need it.

Bring your journey to such a person and you will not be let down :).

You are not alone in your perspective. I get it. Hope that helps.

hugs
depot

I went round this mountain for a long time, so I'll just share what I have learned about it.

Usually it is one of three things, why people close to us don't want to discuss our diagnosis.

One, they love us dearly and are in denial themselves. They are having a hard time coping with it and so really don't want to believe it because they want better for us. Another part to this one are the folks who think "if she has RA, then I could have RA. This is so bad. I can't process this ..."

Two, they don't think it is a big deal, because perhaps they are confusing it with osteo or some other (perhaps less painful, less serious) diagnosis. They don't understand how serious/painful/limiting/disabling it is ... because they haven't gone through it. They have no frame of reference. Perhaps they have never gone through a tragedy before. They think your RA is just as tragic as their fight with their boyfriend or how they got reprimanded at work, or how snarky their new coworker is. They really do.

Three, they are self absorbed and just don't wish to give you any part of their mental space. If it isn't *their* problem, then it *isn't* a problem. In all fairness, this last set probably drives everyone around them crazy, not just you. Thank goodness for #1 and #2 above right, so we aren't just stuck with people in this category.

I hope that helps in some way. I know it helped me to focus on #1. : )

I know what you are talking about, been here for three years now, I get no emotional support from my family, and I did feel all alone, until I found this group(s). It helps me to come here and read, write and learn. My family mostly has been in denial about me having chronic diseases, and a heart valve problem(all this started 3 years ago with open heart surgery) it will need replacing in 5 to 12 years from now, but I can not bring it up to my family. They seem to shut down. A very wise person in cirrhosis group wrote( sorry I can't remember name) I prefer to think they can not deal with not having healthy person they love so much, not ever getting better to how they once were. And feeling powerless to fix it. I too now prefer to think this. I know we just want them to understand, but if you have never experienced something, you have a hard time completely understanding. It would be like explaining what open heart surgery is like to someone, only those who have been there really "get" it. Cherish those people in life you meet who really understand. And know you are not alone.

Thankyou so much everyone. I'm glad you all get where Inam coming from and understand. Everything all of you have said does help and thanks for the hugs also.

People try to avoid a subject which scares them or they totally don't know what to say or do in response! Try not to take their ignorance personally. You might try another approach like saying what you have learned about your disease...trying to find some humor in it..