I don't know if this problem is unique to my family. I live 3000 miles away from my husbands' and my extended family. My immediate CA family,husband and two grown children, understand about my RA and are supportive of me. I don't think they completely understand the fatigue aspect and what it's like to have pain of some degree 7/24, but they know that this disease is unpredictable and there are some things I can't do.
I have one brother in Philadelphia who just doesn't want me to ever talk about my illness. He's completely uninterested. If we are planning a trip to visit him and I want to explain some limitations I might have, he turns me off by saying, "I'm not interested in hearing about your illness". He's convinced that it is all in my head. Several other family members agree. I have sero positive RA along with OA, fibro and Sjogren's. It took years to figure out what was wrong with me and it didn't happen until recently in CA.I might add that in 25 years of living away from my sibblings here in CA, no one has ever visited us. We are always the ones to travel home to see them.
My brother in law is oblivious to my being sick. We took a trip to Rio with him and although he was nice to me, he had no interest in asking me about how I was doing. We are planning another trip this summer and I emailed him that due to the RA I would need some special arrangements at the hotel. He asked me what RA meant.
I almost feel guilty about being sick. Sometimes I wonder if they are partly right.
It's a great relief to be able to talk to friends who understand about this horrible disease. Thanks for letting me vent.
I think part of the problem is I don't look that sick. I actually look younger than my age, probably due to fibro and very stiff muscles. My hands are not particularly deformed and although I sometimes limp, I get around fairly well. I just feel sick.
You know, people like that only bring you down. I realize this is your family, but I would sincerely limit my interaction with a person like that. That isn't a vacation, that is a prison term.I haven't been able to post for a week or so - something to do with the settings on my computer. LindaK, it's frustrating when people don't understand or don't want to understand what is happening to us. I honestly think the word 'arthritis' in the disease name is totally misleading. Many times people hear 'arthritis' and they tell stories about their knee or their shoulder as if one can 'have' RA in one joint and that describes it. I suspect your brother in law just really has no idea what the disease is and his way of dealing with his own lack of knowledge is to assume that somehow you are dramatizing your health. Above everything else, don't compromise what you know you need to be at your best. If he doesn't want to hear about it, fine, but I wouldn't go on any trips with him when he has no understanding of what you are dealing with. It would be like going on vacation as a diabetic with someone who did not understand the critical need for insulin, regular meals etc.
OMG arizonara, you took the words right out of my mouth!
LindaK they already seem to have you doubting yourself, DON'T, you have RA, for the brother inlaw that doesn't know what RA is, send him a printout of what this chronic illness is. I must admid I'm with arizonara on this I wouldn't put myself though going on vacation with him, I would be on edge all the time wondering if I couldn't cope with a particular day they would all be thinking I was spoiling it for them. Thats just added stress to me.
Why not take hubby and go on a cruise and have some you and hubby time, I was in Lanzarote last November with my daughter (b4 this awful RA kicked in) and we had a great time. Vacations are suppose to be fun, varied and enjoyable. You come back totally exhausted because you have too much fun
Your not the only one who doesn't look ill on the outside, I also don't look ill on the outside, only till you see me hobbling along
Marigold, you are right about my brother in law. He's older (73) and the only remaining relative of my husband. I'm not crazy about going on vacation with him, but it's a compromise for my husband. He truly doesn't understand the disease. He said, "Oh I think I have that too". I know he's confusing RA and OA. I am going through a rough time in my marriage where my husband is somewhat tired of my limitations. He's recently retired and wants to see all the places he's always dreamed about. He and his brother have more energy than 10 of me.
Arizonara, my real brother as opposed to brother in law, is just anti medicine. He doesn't believe in doctors unless it's life and death. I come from this Germanic family that believes in keeping a stiff upper lip. My family in Phila thought I was a hypocondriac for years. They still think I am.
Thanks for letting me vent. I can't really confide in my family.
Thanks Cazza, I'm working on geting my husband to compromise and at least have part of our vacation off on our own.Glad to know someone else looks ok but doesn't feel that way.My husband and I have been married for 35 years and have always been comfortable with some separate vacations. Notice I say 'some' because of course you need to have some times when it's just the two of you together. Maybe your husband would be a little less frustrated if he could go away with his brother and do the things he wants to do but that are a bit much for you.
My husband took up mountain climbing in his 50s while I was in graduate school doing my thing. There's no way I can join in the climbing but I certainly can support him in it, and encourage the trips he goes on with his climbing buddies. He's been to Peru, Ecquador, home to New Zealand of course, plus the Colorado Rockies all to do the alpine climbing that he loves. Some of our friends have a big problem with separate vacations. I think it makes for interesting reunions when you each have totally different stories to share. OUr families live on the other side of the world and I always wanted to go more often to visit than my husband - just a fact of life. So I went either alone or took our two sons.
Long story short, I honestly think separate trips can offer some interesting solutions to problems like this one, and they don't spell disaster for a marriage if the relationship has a strong foundation to start with.
Marigold, Good advice. I've been married for 35 years too. We've been all over the world but it's getting harder and harder to keep up. We've been compromising: one quiet vacation for me, the next one more challenging but with accommodations for me. My husband is 67 and I think feels that each vacation may be the last one he can take, so he's inclined to invite more people along so that we can pair off and do some challenging and some less active things with various people.I'm struggling to stay working and he retired this year.Stressful to say the least.At this age we are finding quite a lot of adjustments need to be made, some to do with health issues, some to do with age and money. How long are you hoping to keep working? I work full time too and am looking at retiring in 2009 at age 59. My husband will be 66 then and will probably retire also. Not sure about the wisdom of both retiring at once though! I certainly hope we have more trips to enjoy and I hope the same for you both. They will change in nature by necessity as the years go by but that doesn't mean they won't be just as enjoyable. We went on one vacation with friends to Europe in the 1970s -good friends - but swore we would never do that again. We just about killed each other by the end of the three weeks! Now we go on our own as a couple, or with a friend if singly.
What kind of work do you do? I work for one of the Big Four accounting firms and do Brand & Regulatory COmpliance. Sounds very grand and is a responsible job but it works because I can work at home sometimes - always on the computer which I enjoy.
Hi Marigold,
I work as a special education teacher working with learning disabled Hispanic high school students. They are the migrant farmworkers' children and are quite a challenge. Before that I worked as a college instructor teaching English as a Second Language, American Sign Language, and Art Education, all at different colleges. I am an illustrator too, but have not been very sucessful in that field. I've published one academic book and have tried to write and illustrate children's books. I'd like to do that when I retire. I'm 59 now but can't retire because I'll loose my health benefits and I need those to pay for my Enbrel. My goal is to work half time for the next 3 1/2 years until Medicare kicks in.
About the retirement. Several friends have said it helps if you stagger the retirement and don't both retire at the same time.
It's been good to talk with you - we seem to be at about the same place in our lives. How long have you had RA? I was diagnosed quite quickly in 2002 after it droppped in out of the sky and brought me to a standstill. I was 52 and I think it was triggered by menopause which is not uncommon from what I've read.
I have been pretty well managed since that first awful year = just in the last few months I've had some renewing symptoms and also have a severe problem with anemia that apparently is not connected with the RA in my case - it is to do with the way my body stores (or doesn;t) iron. A couple of weeks ago my hg was 9.7. The tiredness from that combined with the RA fatigue and who knows what's causing what!!!
Going to get to bed early again - another riotous Saturday night of fun in our house!!! I suggested to my husband at dinner that we go out clubbing - he just rolled his eyes. We probably won't make it past 9pm without falling asleep!
Marigold,
I just got formally diagnosed a year and a half ago at 57. I had been diagnosed at about 30 with OA and up until my RA diagnosis. that's what they said I had. Within the last few years, they tagged on fibromyalgia and sometimes said I had CFS. Once the RA was confirmed, I was also diagnosed with Sjogren's Syndrome. It's been a rough journey and to tell you the truth, I'm glad i finally have a name, or names, to put on all my ailments.I'm on all kinds of meds:prednisone, plaquanil,metetrexate, folic acid, and enbrel. I too think the menopause thing had something to do with it all. I'm still on prempro and find it imposible to get off although I'm trying a reduced dose.
Oh yes, I also have skin cancer problems.Most of the damage is on my face, right across the nose where the malar rash would be if I had lupus. Somehow I'm learning these autoimune problems are all inner connected. How are you doing? New York is a wonderful place but the winters are so cold.
Linda, I go on vacations with my hubby and my daughter, they are both very understanding aobut my ra oa and pa. we do alot of walking and there are days I just can't, so what we do is I bring along some hobby projects, books etc. I will camp out in the room or down by the pool and enjoy some quiet time while hubby and daughter do some touring without me. Even in the evening I will rest while they are swimming or I will sit in the hot tub for awhile then get ready for bed. Vic has been absolutely wonderful, my family seem to understand what is going on and the reason why is several are starting to get the same problems, I come from a family of 9 , 2 brothers have ra in their backs and both knees, in fact one has to have surgery, another brother is starting to have the same symptoms as I have had so I have been encouraging him to get into an Rd. None of us have even hit the age of 50 yet, I turn 50 next year and have been had my problems for over 8 yrs. I am now doing well on arava and enbrel. I know you are trying to be nice and keeping family ties open, but you must consider your health, and the stress of these vacations with the brohter are hard on you. Tell hubby you will go, but that you will only spend so much time with brother then you need to spend time with yourself and hubby. Oh and Marigold don't feel bad about your Sat night. My hubby's and my idea of a big night on Sat. is to stay up and watch the RED GREEN show, he lays bets on whether or not if I stay awake through both half hour shows of it!!! hehehe oh well take care. meme
Meme and Fiona,
Thanks for the input. I have figured out how to situate myself on vacation so I can have some quiet time while others trip the light fantastic. I actually do pretty well. I love to read and paint,so those are quiet things I can do by myself when I need to. This whole RA is a real juggling act. It's not so much that everyone is selfish; it's such a complicated disease. Some days I'm up to keeping up with everyone, others I'm a mess. I almost feel like a hypocrite.
Granted, you can't expect the world to revolve around you, but you are not a hypocrite for being upset over someone's insensitivities. It isn't like you can't make adjustments and compromises so everyone is happy. His callousness is the real problem, not RA. I would feel that way regardless of WHY there was an issue.I had much the same experience last summer when we took a trip to Canada. I went with my hubby and his single brother. The reason for the trip was my mother's 80th birthday and we added some fun bits to the beginning of the trip. My brother in law's idea of a holiday is riding a bike across Canada or Australia for 10 or 12 weeks. With RA my idea of a holiday is a cruise or train trip or something a little quieter. He gets grumpy with my inability to join in. He didn't enjoy his trip at all. My hubby understands and even will go on short trips with him. I ruined his plans to have the three of us go on exciting holidays together. I've always let my hubby and his brother go bush walking and camping together, I used to join them when I was able. Now they go together or with nephews or whatever.
We were barely on speaking terms by the time we came home to Aus. He just can't handle that it can't be fixed. I think our next holiday will be just hubby and me. Quiet and relaxing.
I join in where I can and back off when I need to. It works for me, it should work for him. If he can't handle it that's his problem. Hubby and I will have fun on our own.
LindaK,
I too have a horrible family when it come to diseases and understanding. My immediate and my "mis-fit" family are the ones that truly love me and care. They are what I now classify as my family NOT BLOOD. It's taken me a long time to totally separate myself from the "poison" so to speak (years). I have two brothers (1 lives about 20 miles and the other about 50 miles) from me. I can't tell you the last time that either came to see me or even call me. I have sent gifts to them and their families for Christmas and Birthdays for the past 5 years with not even a Thank you or a call from anyone. I learned the hard way ... It's not easy to let go of "so called family". But, if you find yourself hating yourself because you are in pain due to the stress, hurt, poison that a relationship or gathering brings I personally don't feel that it's worth it. Hey... we all push ourselves for events wake up the next morning and thing "wow, I hurt and what not BUT I had a great time and it was worth it". If you can't say that it's time to walk away. My parents are the same way. I can't tell you the last "nice" conversation I had with my mother. She is a VERY hateful woman, I don't understand how my father has put up with her or her behavior. My Grandmother (96) and I talk weekly and send each other pictures and cards. I've learned a lot from my Grandmother and found that it's okay to finally walk away. Linda it's not easy. To say the very least. But, once you have had enough and you know it's right in your heart you are half way there. Don't let the poisons of others hurt you any further than you have to deal with on a daily basis. It's just not worth it Mentally or physically. We have plenty to endure with out adding to it all and on top of it on our own choosing.
Hang in there and just know that you are NOT alone.... and we all have either family or friends that we are dealing with.
*hugs*
Linda don't feel bad about having a good day and then the next day you can't even move, we have all experienced it, this is part of the disease and you have no reason to have to explain yourself. Your health and well being is very important and stress is something that just loves to put a monkey wrench in the program so hang in there and know that we are here for you!!! xoxox meme
On the other hand, if you dont feel like you need to continue a relationship with certain members of your family...dont. And your husband and brother-in-law..let them go do things just the 2 of them.
Good luck in whatever you decide to do, I am just sorry that you have to make this kind of choice in the first place.
Fiona, You said it in a nutshell. The responsibilities of caring for older relatives are monumental. I am 3000 miles away so I have not been on the front line as far as caring for a mother with Alzheimers(now diseased) or my father now 91. One brother, not the anti-medicine one, has been taking care of our father and just finished dealing with the cancer related deaths of his inlaws. He lost a 29 year old son last year to a motorcycle accident. I should not feel hurt that he has not been to vist ever in 25 years of my living here. But when he travels other places, it does bother me that he never visits me. My sister has just been diagnosed with a brain tumor at 54. She is my best friend and confidant but dealing with her own dilema. I guess getting this disease at near to retirement age is a double whammy. We're supposed to be there taking care of aged parents and supporting our family, but we ourselves need support too. Glad to hear from you.Linda,
So right Fiona, We often don't look that sick. I remember when I had skin cancer surgury and lost a big chunk of my nose, the doctor saying that it was nothing compared to the RA. I got plenty of attention for the 30 stitches in my face which has since healed . I just wish they'd find a cure for the RA. We don't get to pick our relatives so we just have to live with them. I actually love them all, I just know they're not going to change, or start visiting, or call unless it's earth shattering. crunchy and natalie, Thanks for the support. By the way crunchy, How's the weight watchers today? It is true that the chances of changing anyone is pretty slim. We just have to accept our families as they are. I guess that I am fortunate to have some family history of RA because I get alot of advice and support there, but it still is hard for my husband to understand. And some of you can look at the bright side, at least you were not diagnosed while you children were still at home and very dependant on you. It makes for a long day when you HAVE to meet the needs of your family. My parents are still relativly young, but my grandparents are in their 80s and live down the street from me. They moved here from out of state a year ago so that my mother and me could help them out. My grandma is in the hospital now and my mom and I spent Sat. night sitting in the ER with her until 5am. We were both stiff and sore and just wiped out today. It is alot no matter what stage of life your in. My mom is kind of at the place that many of you all are at now. We just do what we gotta do and try to make the most of it...after all, its all we've got.
I am new to this site but very old to being sick...I have been experiencing the same problem now that I have been diagnosed with ra in addition to sjogrens and celiac. I started mtx in addition to plaquenil and pretty much feel awful. I live in Pittsburgh and my family is here but you would never know it. I understand what you say about looking like you are not sick as I have gotten that comment from so many in my small family. I have always been the one to put on a family meal during the holidays, despite the fact that I felt terrible, (but alas, I look wonderful! lol) My husband and my 11 yr old are so precious and so helpful and yet I feel that they need some help. Now that I need myfamily they are nowhere to be found. When I do hear from them, I have to hear how sick my elderly aunt is from arthritis who is 90 and I am 41.Although I feel badly for her, I am never asked how I am. No phone calls, nothing....All despite having been there for everyone else.hmmm....what to day about your situation and mine....well...apparently, we have either some family members who are self centered,blind to situations, purposefully blind, or very ignorant to this disease. I have decided that I cannot change them and I frankly, despite the hurt do not have the time to do so. I am just to sick to deal with what ails them...take care of yourself.In the defense of all of our inconsiderate relatives & friends, I have a very good friend who has psoriatic arthritis, and there were days when she just wouldn't show up, or when she would show up & do nothing, and I never doubted she was ill - she was obviously very sick - but I had no idea how bad it was.
You can't know. In fact, on my good days, when I can walk and dance and go up & down the stairs without a second thought, I almost don't believe it. If we were the way RA patients used to be, all clawed & twisted, then people would believe us. I'd rather not go that route, though.
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