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10/08/2010 11:01 PM

Tips for helping friends/family understand

pjackson632
pjackson632  
Posts: 45
Member

I am having trouble helping my friends and family understand what I am going through. I am going crazy here...they think that I am going crazy (even I do) and that I am just super grumpy. I just wish they could understand how I feel most the time.
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10/09/2010 01:31 AM
cella
cella  
Posts: 999
Member

Hi PJ

It is difficult at times to deal with people not understanding the components of RA....even those closest to us that try to understand, just fall short of being able to know what we go through on a daily basis.

I used to feel like I was complaining when someone would ask me "How are you feeling"?....Do they really want to know?....my first reaction which I always kept to myself, is I feel like crap...anticipating my movements throughout the day, and being in constant pain, just made me miserable. So I would usually just say I was feeling okay because I didn't want to explain.

Some people would get RA confused with osteoarthritis, even after I would tell them what RA was and what RA was not....

I would suggest you go to the articles section of this forum and look at the bottom of the page, it has letter about RA to family and friends. You might want to print it out in case you want to give it to anyone that has questions about your RA....

I do understand your dilemma, and wish you luck in getting through to your family and friends.


10/09/2010 09:08 AM
PauleR
PauleR  
Posts: 1847
Group Leader

I second Cella's advise. If you give them something in writing, they can read it and get a better idea. It should help that it was written by someone else, so it's not just your word. But, please, for your sake, don't expect them to fully understand. Only someone with RA can truly understand. But, do expect them to have empathy and concern when you are suffering.

Hope you are feeling better soon.


10/09/2010 01:31 PM
bearlie
bearlie  
Posts: 1518
VIP Member

Yes, Cella is exactly right. And as Paulette said, they still won't fully understand. This is something we all seem to struggle with on here so any time you need to just vent about it... feel free. We will join you.

10/10/2010 11:48 AM
gemini2
gemini2  
Posts: 423
Member

PJackson, I also agree with the advice given by Cella, I've done it myself, as I was having a hard time explaining it as well. Good luck, dear, I hope they get a better understanding real soon. Take care. Smile

10/11/2010 06:24 PM
pjackson632
pjackson632  
Posts: 45
Member

Well the letter just seemed to upset everyone. They said it felt like I was just telling them they weren't doing anything right. UGH! Sometimes it is just better to lay in bed and cry.

10/11/2010 07:23 PM
PauleR
PauleR  
Posts: 1847
Group Leader

Aw, man! I'm so sorry they didn't react the way we hoped. Bu, it is something that will stay with them and you might see a change in their ways. We'll hope for that.

10/11/2010 08:06 PM
bearlie
bearlie  
Posts: 1518
VIP Member

Maybe they needed to hear that they're NOT DOING ANYTHING RIGHT. Sigh. While you are having to struggle and deal with the "joys" of RA, you also have to educate your loved ones. Teaching them is important and they will be better people for it (more compassionate with others) but it is not easy.

Please remember to encourage them when they do something right. And to thank them for their efforts. We have to be the strong ones and remember that their clumsy attempts usually indicate that they miss us (the way we were) and they need us and they think (heaven help us) that their comments are helpful.

It does get better, there will be set backs, but our loved ones are worth it. Not every family member and not every friend but our true loved ones.

It is discouraging and frustrating but it is not your fault. It is this blasted disease and they do not understand. Even when beat over the head with the facts they don't understand. But they can learn to offer to get a blanket, a glass of tea, to do some chauffering, to get the heck away. they can learn that we're dealing with stuff the best we can and to not feel like they can gallop in and fix it.

Just this evening my husband has seemed like he is clueless -- clueless i tell you. I snapped his head off and gave him the stare of death. He gave up and went to bed. I am patting myself on the back because i let him live. We begin again tomorrow. This process... i don't know of a better way but this gets more, i guess bearable.


10/12/2010 09:15 AM
pjackson632
pjackson632  
Posts: 45
Member

Thanks guys. I tried to sit down with them and tell them all the things they are doing right. Everyone said they just want me to be "normal sp again", hear that kinda hurt because I know that if it isn't the RA that is getting to me one day then it is probably going to be the medicine. My boyfriend is getting so much better. He asks if I need help or how he can help instead of just taking stuff from me to do it, he knows when I am having a bad day and when I get angry with him instead of starting a big fight he just says I love you and goes to do something else, and some days he will just lay in bed with me and try to help me stretch and relax. I have faith things will get better I am just so confused I don't know whether to scratch my watch or wind my butt! This emotional roller coaster sucks. I am most def. going through the 5 stages of grief. Does that stop? Do people stop being so angry and depressed? I feel like all I can do is complain and I don't like it...I try so very hard to put a smile on my face and say I am fine when people ask how I am but it is not easy. I am not a good liar

10/12/2010 07:17 PM
amaqn9
 
Posts: 130
Member

Pjackson,

I remember showing my husband the 5 stages and asked him what stage he thought I was in, he replied "I don't know, what time of day is it?".

I've bounced between the stages but I kind of got stuck in the anger/depression stage there for awhile. I just got so sick of dealing with people that I just quit life. But I have children so I knew I couldn't stay there.

I have learned to be honest and communicate with people. I now tell people that I have an autoimmune disorder instead of saying RA. It is more accurate and gives people a better idea of what you're dealing with. My family felt helpless so I wrote a "in case of flare sheet" for them with ideas of how they can help when I'm flared. I just started going to a therapist who deals with chronic illness. And I've been going to water aerobics for three months which has helped a lot with the depression I felt. I stopped telling people I was fine and started asking for help. Things will get better, you will learn how to balance your life with RA and it will improve even if the RA doesn't. I wish you the best-ANdrea

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