Social issues with RA | Arthritis Information

Hi,

How do you deal with friends and family who still expect the same level of help, participation, energy, involvement and fun from you? They don't understand your level of pain or fatigue as it sometimes can't be measured by outward appearance.

People usually judge one's progress by how one looks. You don't want to go around complaining about your health all the time. Then again, you have to allow people to know that you have limitations.

Where's that happy medium? Thanks.

Oh Danielle,

This is such a hard topic. I'm sure most, if not all of us on here have lost someone due to this illness. It stinks to high heaven. I just do the best I can and have learned not to focus on what others think. Heck, even my own family doesn't fully understand it. Somedays I don't even fully understand it.

Good luck

Phats

You have to learn to say, "No" a lot. If you cannot do things, say so. If you must offer an explanation, then do so. Tell them that you have a serious disease called Rheumatoid Arthritis. This disease is not the same as the arthritis that old people get. It is a disease that causes constant fatigue and pain. It has good days and bad days. It causes you to have to change plans at the last minute because it makes you so sick. Other days, you can do most things that other people can. But it does cause ups and downs and that even though you might look fine, many times you are in a lot of pain or very tired.

Then when you've figured out what you want to say, measure the response of people. The ones that understand or mostly understand, keep them close to you. Those who don't, don't put as much energy in them. When it's family, you just have to teach them about your disease so that they will hopefully understand some day.

Hi,

Thanks for the replies and, funny thing, I am talking about my own family. To others that I see or hear from occasionally I just say I'm fine, never been better. Then family, whom I thought would be understanding....well.... as Tony Soprano says. "Foggedaboudit."

I have seen the handwriting on the wall and I can tell who's going to hang in and who isn't. I was kind of disappointed and wondered if others have had the same experience. Yup, it sucks.

Only my husband, who lives with me, truely knows about "good days" and "bad days". But I even have to remind him on occasion that I'm having a bad day and don't feel like "walking around the mall".

Recently I attended a recital and tickets were quite expensive and purchased by someone else and I was worried about not feeling good that day. It was a good day and things went well.

Sometimes it helps to actually tell people what a "bad" day is like. If you tell people that you needed a cane yesterday to get to the bathroom but the next day you were out at the park for a picnic it will seem strange to them - almost unbelievable, but it's reality for me.

I recently "confessed" to friends of mine that sometimes I decline invitations because I'm afraid they will make plans around me and I won't be able to be with them. They were so glad that I told them this and said that they understood and will keep that in mind and will know in the future that if I am hesitant about accepting invitations they will know why.

MaryThis is hard. My mom is ill as well so she does understand but my husbands family, has NO clue. I have tried to explain so has my husband and they just don't get it. Not to start a religious war or anything here but my FIL says if I would only accept God, than I would be healed. I really don't need those type of comments, especially since he knows my stance on religion and well, lets just say its not the same as his.

My best girlfriend here, does get it to a point. She has seen me writhing in pain, crying and sees the daily swelling and whatnot but there are still times that I have to remind her. I think unless you have truly suffered a chronic illness, its really hard to understand.

Hi,

Wow, I feel bad for you Micheleb. I don't know what your FIL means by that. Does he think that we who have this disease have brought it upon ourselves and those of us who aren't healed haven't accepted God? LOL

I know some very devout people whom I've met since my diagnosis and they have, I am pretty sure, accepted God as your FIL means it. What they say is, "God only gives us as much as we can handle."

I respect any and all religious views, or lack of them, as personal and private. Tell your FIL, "Think what you wish but no proselytizing." My own son, with whom I have an excellent relationship, said that to me one day while we were discussing religion and our viewpoints differed. From that day on I have taken his advice; not only in religion and politics but in all aspects of life. That's the kid teaching the mom a lesson.

After reading all of these posts it finally dawned on me. There's nothing we can do about what they think and who cares? It is apparent that those who were ******** to us before our DX remain the same old ******** after.

Thanks for your help.

I kept my family and friends close by and informed about RA. If they cared to share my life then they also had to share the disease with me. It worked for me. Even if I couldn't entertain I could still have a tea party with my gal pals. My house was sort of the center when it came to get togethers and that never changed. My priorities were my family and friends, not the disease. They understood about my worst days and sometimes I'd get email cards or someone would call and just leave a funny message. I'd find flowers in the house that my son would sneak in. Most of my friends are either other artists or in the healing arts and they understand. My family still sees me as a dynamo, a little fatter, a little slower, but I'm still me. I'm not the disease I'm just me and for the most part I haven't changed except physically. Friendships and family relationships evolve and change; it doesn't matter if RA is present or not. It's a natural, cyclic change. Sometimes it's good and sometimes it's hard for us.

I do know that I'm upfront and share my life as it is with my friends. They go through the roller coaster of life with me as I do with them. Keep your family and friends close to you, they're the best medicine in the world. Lindy

I had to think long and hard before I answered this one. At this point in my life and my ra journey I do not really care anymore what people think about me and my illness. I have a few non ra friends that really understand and know that sometimes I just have bad days. They also understand that if I say no to something it isn't that I am blowing them off. I am just not up to it.

Family...well...the only family I have is Danny's family. They are not that understanding nor caring no matter how we explain things to them. A 2 hour car ride to visit them is sometimes hard to manage. But they will not come 2 hours to see us. Nor will they stop by on their way to their cottage in Green Bay to see us. We live 10 minutes off the freeway they HAVE to take to get up there. It's not me that is hurt by all of this. It is my girls. To them, it says we don't care about you. They are slowly accepting this is how it is. They don't get upset with me because we can't go drive 2 hours to see them. They get upset with their Aunt for not taking an hour out of their lives to see them. One day, she will have to face the girls on that. And it won't be pretty. Especially since now Danielle has JRA and her Aunt has not once called since we told her about it to see how she is.

My husband...is very understanding. He does get frustrated sometimes and has said one thing that hurt me very much. He did apologize to me and since then...he has been back to his normal great self. My kids are very protective of me. They have grown up with this and this is all they really know. We talk with them a lot and they have accepted this is how it is. Wish we could change it but we can't.

Danielle- There does come a point when other peoples opinions about your RA wont matter to you. You can try to explain and a lot of people will try to understand ,others will think you are complaining about nothing. Its the "you dont look sick" thing about this disease thats hard for them to comprehend.Or the stigma of rthritis being an old age illness.Theres not a lot known about RA to non- sufferers.

Liz- it is such a shame about Dannys family as they are missing out on their wonderful grandchildren and it must be hard on Danny as well.My sister-in-law ( husbands sister) is the same.She lives in South Africa and came over last summer to see us.We went on holiday to Cornwall for 2 weeks and she wanted to go out and about everyday sightseeing. I tried for the first three days and couldnt keep up.She made the rest of the 2 weeks hell for me as she kept making snide comments on how i ws spoiling her holiday and i was only doing it out of spite

Family huh!!!!

How wonderful to see you Deanna

I do what I can and if someone asks me to do something I cannot, I say I wish I could but I hurt too much. Strangers - I just say I am disabled and leave it at that. So like Deanna said - I just say NO.

I am fortunate in that my family has a cousin - not my blood relative - who has severe RA. They have seen her progression from being a very active vivacious woman to wheelchair bound, severely deformed, dependent on her mother to care for her. They also have seen how my hands and feet have changed. Besides, it is a no brainer because I was the one that was always active and energetic. It would be horrible if they did not support me. Anyone besides family - they have no choice - I do what I can do and that's that !

PS I am very greedy with my spoons. Have you read the spoon article? I love it when I talk to my hubby on the phone about plans - he always says - be careful with your spoons

Thanks, everyone, for all the responses.

Lindy, you are SO right. Families and relationships change...I think maybe I am just realizing that the behaviors I see now are the same behaviors. Nothing has changed because I have RA, (well, maybe just me) these people are exactly who and what they were before my DX.

I guess I just expected more now. Sounds as if you have wonderful friends and a great attitude. I'm hoping you rub off on me!

Have a great night everyone. Thank you!!

I had been in a playgroup for the past 2 years. I was "removed from the group" a couple of weeks ago. Because the gal who did most of the event planning said it was IMPOSSIBLE for someone my age (I'm 25) to have SO many health problems, and she simply felt I have a severe case of Munchausen's, and I like for my children to be sick (My son was a preemie....she HAS two preemies....she wasn't allowed to take them out for the 1st 6 months....so she KNOWS better. Stupid cow!!). So shhe felt I would be better if I stayed away from moms because I was "bothering" people.

Ummmm, OKAY lady. I told her MONTHS ago that I was NOT reliable, that I couldn't always leave the house, and if that was going to be a problem, to let me know. She always said it was okay. I hosted about 2-3 playgroups a MONTH at my house. So for her to say I was "inactive" is total bunk. She said that attending events at my own home did not count towards my weekly requirement of 2-3 events. Whatever. I thought we were friends. I NEVER confronted her about thhe fact that the LAST time she was in my house an entire new script of Xanax went missing. As did a bottle I had with about 15 percocet in it. (I keep 3 different bottles around the house...partly in case someone ever breaks in, and for me to get to them easy in the morning). 15 percs was FIVE days that I went without meds and was in pain, cause someone decided to be a jerk!

Ugh. So yeah, I have lost friends, but I have learned that the people worth KEEPING as friends stick around in tough times. It weans out the morons.

My husband is amazing...and my in-laws are OK. My MIL is against ANY meds.....she has Fibro and will not take ANYTHING when she's flaring. SHe jsut doesn't eat for weeks on end and ends up sick and in the hospital. So I don't listen to her when it comes to healthh anyway.

Danille, my attitude comes from the fact that I don't have the stress of raising children and dealing with work issues. RA hit me severely later in life. I was 55 y.o. when I was diagnosed and I was able to retire and devote time to myself. Unfortunately, I had a severe onset of RA, a blown disk, back surgery and menapause to deal with all at the same time, but I survived. I don't think my attitude and outlook on life would be the same if I had had the additional stress of raising children and working. I've written time and time again, I don't know how the young mothers with RA and who work outside the home do all that they do. I admire them and they really are my heros.

I do have wonderful friends, but I've really had to work at it, and you know it's been worth it. It isn't that I care what people think or do, it's that I care for those people. When we care enough we make things work, somehow. There have been people in my life that took too much energy to be around. I eventually said good by to those people. I only have enough spoons for the ones that I love and respect. Lindy

Wow, can I relate to this. Our house had been the center of activity for the last 8 years. We had the youth groups in, kids friends all the time, hosted most of the family get-togethers and had a Bible study every week for 8 years in our house. My family understands about my ups and downs and so do the closest relatives because there is RA and PMR on both sides. The hardest part has been how to let our dear friends know we just can't do it anymore. We tried to keep it up for a while and then just let it all go. The hardest was moving our study to another house. I'm sure some of them see me in church on Sunday and think I don't "look sick" although they have been kind all the way through this. I decided it just is how it is and I am in a new stage of life. There is no point in feeling bad about it. We try to find easy ways to get together with our best friends now and then and let the rest go.

Laker

Michelle,

Tell your FIL to get out his Bible and read the book of Job! He doesn't know what he is talking about! Sigh there is always a "professed Christian" out there with an unkind or stupid remark that makes everyone look bad.

Laker

Wow MsMidge, all I can say about that playgroup mom is that I do not believe in spitting up, it might come down on you. Karma is a dangerous thing to scoff at.

Thanks all for wonderful advice. I have not read that 'spoon' thing you keep referring to but I will now. I'm sure it's somewhere on here.

I too have suffered for years with this terrible disease. Many of friends have come and gone.

My family knows my struggles and some friends do too. I have just entered a new relationship and sometimes I feel I can't do enough and feel often guilty for feeling bad. Maybe sometimes it's just best to be alone and not feel the guilt of this disease. This disease for me changes minute by minute .... I just wish it would go away for a while.

Hugs.

Pip

I can't believe I missed this thread!!! I wish I had something to add though.....really all I wanted to say was I'm sorry for the folks who's families are butt-heads about it. :( *hugs* And Midgie.....I luv you!! I'm so glad you found us :)

Katie - this is an old thread that came to the top because of a Newbie - Gdblaze. I sent her a hug. Danielle already had one. :-)

Pip

I think everyone on here needs a hug!! :( I wish I was closer to some of you folks sometimes. *sigh*

I've recently lost a bit of weight and am pretty thin. I haven't felt too well and quit using my self-tanners for a few weeks. Since the weight loss and reverting back to my naturally pale self, I've noticed a shift in attitudes towards me. People seem to think I'm SICK! Even my doctors appear more concerned. Funny thing is, I've felt worse than I do now, but since I looked healthier, I felt at times as if I wasn't being taken seriously.

Not funny at all. Just par for the course. Because my PRA went 6 months between attacks that lasted for only a few days, by the time I got in to see a doc I looked fine - maybe with a lingering echo of the original screaming pain. I had to take my husband in to talk to them as I tend to get hysterical near medico's. Amazingly, he'd calmly repeat just what I'd just told the doc - and the doc would listen - to HIM!

Pip

I think a lot of my friends just think I've "outgrown" them. I don't call and suggest we get together too much lately because I'm tired. My mom has RA and she and I commiserate often. I have one sister who has NEVER NEVER even asked me "So how are you feeling". She's in the med. field and has never even asked me what meds I'm on. I don't speak to her too often. I find a lot of people are out for themselves.

HEre's my big gripe: Anyone notice how when you do your food shopping they always pack the heaviest stuff in ONE BAG???? I help bagging always and I try to grab the heavy things (milk, oj, dog food bag) and pack it myself. Finally yesterday I said to the checker "I don't like the heavy stuff all together" and she said "Oh well some people like that, it uses fewer bags you know - less waste!" she was actually getting an attitude with me!! I didn't want to explain to her that I have a condition that makes it difficult to lift heavy things but she kept at it. She started to lecture me about how I should have someone who's home (husband) unpack the car for me. I just stood there, quietly packing my stuff. Boy this is a weird grip to post!! Sorry guys!! Hehe it's not weird! I completely understand. That's why I adore Publix. Their people take your stuff to the car for you!! How spoiled am I?

The friends and family issue is rough for us. We have always lived far away from our families, so I have had little support. My mom tries to understand, but my dad changes the subject if I bring up anything about my health. One of my dearest friends here said her mom HAD RA and was cured by eating a chicken breast and broccoli every meal. Because I refused to try her "treatment" she decided I wanted to be sick and our friendship suffered. Other friends seem to have distanced themselves because I have had to cancel on occasion. It is very sad.

My Dad too changes the subject when I talk about my health. I think it's really hard for parents to accept their kids being ill (no matter what age they are). The only reason I talk about it so much to my mom is because she's in the same boat as me. I am starting to get tired of telling/explaining to people about it though. I mean, when the painter wants to come at 9am, and i don't know if I'm going to be stiff, tired, whatever, or like I posted above, when the grocery checker is packing all the heavy stuff in one bag and lecturing me about not wasting plastic bags unnecessarily etc. I just hold my tongue.

Yeah, I would bet anything that it isn't that your dad's don't care. It probably hurts them to see their daughter's being sick and they don't know how to deal with it, so they block it. For those who have been shunned, man, that sucks. I guess it's true that they obviously weren't very good friends in the first place. But so what? That's gotta hurt and I wish I could help.