I'd be interested to hear your experiences of how you told your loved ones you have RA.
Did you choose your timing carefully? Did you have a 'plan', and if so - did it go as you wanted/expected it to?
Having told them - how did they react and what did they have to say?
Thanks,
Jemm
I think a lot of people who dont know about it
are simply indifferent to it. If they dont know much about RA, telling them you have it doesnt really impact them greatly.
Not saying everyone is inconsiderate, its just not as well known so i would assume most people would just say 'so what does that mean?"
Yeah, I'd have to ask my mom about that. I was so little, I don't remember. My family is pretty much all sick though, so I really doubt it was anything other than "well what is it? okay...so what do you do for her? okay...well thats good..." etc etc
I remember trying to explain it to my friends though. Usually they just didn't get it, so we dropped it and didn't really talk about it. When I had all of my overnight braces and splints, I think we were all too young to let it interfere. Little kids can be so oblivious, it's great. :) I think I have a harder time with it now that I'm working than anything. I almost got let go at wal-mart because my left wrist locked up while I was on a ladder, and I had to go home. They were in such a panic that I was going to go after workers comp, even after I explained to them what it really was. It was kind of annoying. I hate having to wear my braces or be on crutches at the hotel, especially working the front desk, I find all the reactions to be either: from an older person - "oh, I have that too in my ___" or, from everyone else "but you're so YOUNG!" And it just kills me that a random person that I'm checking in for a vacation actually has the gall to ask me "so what's the brace for?" O.o NOYDB. (none of your damn business) lol
It's one thing to explain it to friends and family, they care for you. No matter how difficult it is, you'll always get through it. But when it comes to strangers and people in passing, I think it just gets more and more akward.
It took me so long to get diagnosed that it was no shock to anyone when I got the final diagnosis of RA. To tell you the truth, most of my family thought and still think I'm a hypochondiac. Many people have no idea what RA entails. Many think it's the same as OA. I've given up trying to educate them about it. When they see me in a splint or using a cane, and ask I tell. Otherwise, those in my immediate family know and care because they see me on a regular basis. Extended family are out of the loop.My family knew I was sick a long time. my sis-in-law has a cousin who is very crippled by ra and is very loved by her family. Because of that her family was great. My brother- like all the men in my family showed no emotion but does show concern that Brett takes care of me and I do no lose insurance. He also says things like I dont think you should be working - so I know he cares. Brett had to be educated. I think he needs to be re-educated because I was so certain once I was on biologics I would get all better. I have heard those stories and usually athletic people have had such success from biologics. I think now he is frustrated - sometimes with me - that I have not gotten better. I still hope I will improve drastically once we move. Stress and ra do not get along. Good luck on telling your family. It makes such a difference with a supportive family.OMG she said hands to her mouth, you poor thing, how dreadful. You know, I actually felt relieved, this is the first person (it runs in her family) who actually had any idea of what it is and means. I could have hugged her!
My family took it in their stride, they knew something was up and were just relieved that it wasnt cancer again.
Wendy
See...I dunno....I HATE it when people go "omg...I'm so sorry, that's just terrible" I always snap and go "no its not. I make it just fine" I guess I just don't like people thinking I'm somehow handicap just cause I may need a little help here and there. I dunno..maybe thats just my young independant side? But it really drives me crazy. I rather like the people that just go "oh....well what is that?"
I guess everyone reacts differently, and likes different reactions!
LT
For me, my mom was diagnosed as a child so when I started having symptoms mildly about 6 years ago I started saying it is probably arthritis. There was no big shocker when I got officially diagnosed...no shock to anyone but me. I guess I thought I was wrong...I dont know why. I tend to not believe things untill I have proof. I dont get excited about things untill they happen, and I usually dont get worried about things untill I have to. I am not perfect, I do worry, but things like asumming a diagnosis, I just try to put it out of my mind untill it is official. Even after, even now, I think that the doctor is going to tell me he was mistaken.
Now telling friends and coworkers was more of the Oh Wow reaction...but I dont think anyone has felt sorry for me. I dont want pity....but sometimes it would be nice to have someone do something for me in an effort to help out and show they under stand that it is hard for me at times to get things done. But most people would rather just tell you how sorry they are then actually give up some of their own time to help a friend.
It is sad but the truth is that anytime you have a major change in your life you are going to lose a few friends. You get married, you lose touch with some of your single friends, you get a better job and leave your old work buddies behind, you get a disease and you lose anyone who is active and doesnt like to just sit at the house.
I actually feel sorry for people because my guess is that they don't know what to say - if they don't say anything then to some people they are cold or uncaring - if they do they are nosey, it they say just get on with it then they are ignorant, if they show sympathy then they are patronising, I mean, believe me I get it, i get so sick of have you tried a copper bangle and, Oh I have RA in my thumb (when it's clearly OA) etc but then what else are people meant to say and to be honest I quite welcome it when people say - have you tried... because you never know, maybe I haven't and it just might work! I just try and cut some slack to people as long as they are OK if they are sympathetic then I am nice because they are trying and maybe someone else out there who they will meet one day will really need their sympathy, which they might be too afraid to offer if I go off on one at them.Flint, I think you need another hug.
It is most heart breaking I think for young mothers with children. I've got mine raised. I don't have to worry about lifting, watching, keeping them safe or having energy to play with them. It must be simply awful for you and yes, I can see where you would get down about it.
My RA came on with a BAM, putting me in the hospital twice within a couple of weeks, having a biopsy, and all kinds of tests. So, everyone knew something serious was wrong. But getting a diagnosis turned into a long drawn out affair. And, it turned out to be several autoimmune problems not just RA and not just OA.
My kids were terrified and they grew distant. They were in their late teens and they always thought of me as Supermom, handle anything. The rest of my family offered to help me and then forced me into a situation that eventually made me homeless through their cruel remarks and unwillingness to understand. They were quite abusive with their attitude.
I had friends that I thought would understand, including a boyfriend. They were awful. They just threw the "you need to exercise", take natural remedies (I mean really shoving this down my throat). But when I really needed help they proved that they were not going to be there for me. So, I lost friends. But those kinds of friends, you don't really need.
Work was the hardest. I spent a lot of time over the last few years explaining my condition. They never got it. And, now that I've quit working, I feel a great relief in not having to justify existence each day. People saw me detoriate over time, yet their compassion was very limited.
I think that is the real problem is that people don't know how to be compassionate for the most part. I tell my daughter that we need to spread compassion to others in this world as much as possible because it comes in such short supply.
Sometimes, you have to teach people not only about the disease in general, but how it affects you as an individual because that varies greatly. Then, you have to teach them how they can help you through it. This may be simple things like explaining what times of day are your higher energy times and that this is when you can spend time doing things with them.
You also have to let go of a lot of energy drainers. These are friends and family who don't understand. After 6 years with this disease, my parents are finally coming to understand how devastating this illness is, that's chronic and we cannot just wish it away. But this also took my not having any communications with them for 3 years, my dad having prostrate cancer, and my mom having severe heart and kidney problems. Now, they kind of get it.
I've had to let go of a lot friendships. One, I can't meant obligations to get together. I don't know if I'm going to have the energy or not. That's hard on friendships. I mostly have virtual friends and phone friends now. But they are very important to me.
If someone doesn't understand, I don't waste my energy on them. It is too limited. I say "no" a lot to other people's expectations. I can do what I can do and no more. I am human with limitations. To ask more of me than that is just unreasonable and cruel.
When you break the news to someone, first state what it is. Tell them also that it is an autoimmune disease that affects every system in your body, not just your joints. Until a few years ago, people that got it ended up bedridden or in wheelchairs with deformed joints. Now, it can be fought with very toxic medications, much like what cancer patients go through. But cancer patients usually do not have to go through decades of toxic medications like those with Rheumatoid Arthritis. There are terrible side effects from the medications. Severe, delibitating fatigue is a symptom for RA. And, having RA sets you up for additional diseases and very susceptible to infections.
Tell them that you are in the process of adjusting to this illness. You have no choice and if they want to continue to be part of your life, then they are going to have to make adjustments too. This is not something that you caused or earned. It is something that just happened to you. And, you are not going to feel guilty about being sick.
Then, you let them think about it. Let them know you are willing to answer questions, will point them to web sites where they can read up on it. Tell them that to get better, you do need their support and the better their support then the better you are going be at dealing with this illness.
I have to say that my children have been my greatest supporters. Their big hearts have got me through so many difficult times.
Build yourself a support system of people who will be there for you. You need someone whose shoulder you can cry on, someone who can understand your anger. You need friends that are still your friends whether or not you can make a lunch date or go on a hike.
And be your best friend. Take care of yourself. You haven't lost yourself, but your world is changing. That's ok because life is change. It is painful and awful, but there are good things to those changes. I like myself much better now than before I had RA. And, my relationships are much deeper and more fulfilling.
When I told my family and co-workers, they really had