I am 49 and have had RA for 20 years. I had to give up work 12 months ago I am due for knee and wrist surgery in the next few months. If you don't feel able to do something don't, everyone has different experiences with RA - Your BF should tell his family and if anyone accused me of being lazy - God help them. If your BF does not understand the pain you can be in, then bring him with you for your next checkup. Every single person I know with RA has had different experiences with medication, doctors etc., so no two people's disease progresses at the same rate. So at 26 it can be as advanced as someone elses at 66 so listen to your body and if you don't want to do something don't
I wish you the very best of luck in managing your disease.
Tell your family that you have a chronic autoimmune disease that leads to significant discomfort and disability. Although rheumatoid arthritis most often affects the joints, it is a disease of the entire body. It can affect many organs and body systems besides the joints. This is what is meant by systematic disease. Let them know that:
* Many people with rheumatoid arthritis have difficulty carrying out normal activities of daily living, such as standing, walking, dressing, washing, using the toilet, preparing food, and carrying out household chores.
* The symptoms of rheumatoid arthritis interfere with work for many people. As many as half of those with rheumatoid arthritis are no longer able to work 10-20 years after their condition is diagnosed.
* On average, life expectancy is somewhat shorter for people with rheumatoid arthritis than for the general population. This does not mean that everyone with rheumatoid arthritis has a shortened life span. Rheumatoid arthritis itself is not a fatal disease. However, it can be associated with many complications and treatment-related side effects that can contribute to premature death.
Let them know that symptoms of RA, like fatigue, pain, limited mobility can manifest for several years before the disease is diagnosed. If they still think that you are lazy, instead of ill, find a competent psychologist to see to find ways to deal with the lack of support from your family.
I was diagnosed with RA when I was 33 years old an am now 46. You can do everything everyone else done as long as you don't have a flare or have been told not to by a doctor.
There were many many times when I had to use stairs on my behind and had casts on my wrists to contend with but the problem among many with people with Ra is that you appears normal on the outside so what I did was to gather pamplets about the condition and let everyone read them as people know very little about the disease.
Jessica, your friends will never understand unless they go through it. I was 26 when I found out I had RA and I am 57 now and I am still working. Before I married my husband he never understood what I was going through until he started having medical problems. When I met him 13 years ago there was times when he thought I was just lazy when I didn't do certain things. He use to say things like,"if you get up and move around you will feel better." He didn't realize there were times when I couldn't get out of the bed. In the last 5 years he has had 2 hip replacements, lung surgery and his ankle was broken in 3 places. Now that he knows what pain is, he has apologized to me about the way he thought. Now both of us has our bad days and all we can do is look at each other and laugh. We love each other so much, that's only 1 of many things that we share together. Be strong and remember you are not alone there are a lot of us out there. One thing that keeps me going is I always tell myself there are many others out there who are worst off than me. Good luck to you and keep the faith.
I am 30 and I have been diagonosed with RA since I was around 2 yrs old and have had 3 surgeries on one knee alone. For those of whom stated below you can't be that progressed at 26, please bite your tongue. They didn't officially know that it was RA with me, I was a guinea pig for years and still to this day are they testing me for lupus and more things as well. I have had surgeries, I have a sway in my hands, I limp, and can barely fasten my bra at times! Regardless of your pain, remember bodies in motion, stay in motion. YOU ARE NOT LAZY! but be honest with everyone. If you are having a flare up, let them know that unfortunately you can't but that you would love to when you are feeling better. Remember although it's a disease, you are alive! Live your life! I have accomplished plenty of activities throughout my life, but don't let it consume you. Gather up information about RA, ask your doctor questions, bring your boyfriend to your appointments, but don't fall into being "lazy" because you just don't feel great that day. Sometimes getting up and going for a walk will make you feel a lot better than curling up on the couch! And remember, having RA you need to excercise to help your body! Good luck!
Your arthritis cannot be that much progressed at 26 - I've had it since I was 28 and I'm 69 in 3 weeks and still working part-time (typing all my life). I've had surgery on both hands for Carpal tunnel syndrome, and Osteoarthritis in my hands as well as RA all throughout my other joints! One HAS to keep moving and do what they can - I live alone and am the mother of 4 adult children and 1 grandchild. I know what you get as I've gotten "By now, everyone on the planet must know," but they still don't understand until probably I am long gone and they now have RA/OA themselves. That's when I too realized what my parents went through and without much treatment except for an odd aspirin or topical cream rub like Ben Gay or Icy Hot, which I would send from America!! However, before I go I have to be honest and tell you that finally, I gave my notice for end of year as I don't want to be a burden rather than a help, and whilst I always worked hard and fast some here admit that I "gave them everything, including my hands, eyes and heart." So keep going as long as you can, maybe there'll be a breakthrough for you still - you're young and there's always hope!
Rita Hynes at MGH or RHynes@Partners.org
Thank you for your comment. I'm 58 and trying my best to work. This morning it was all I could do to get out of bed and walk even to the bathroom, kitchen etc. Then to have to climb stairs at work is even more painful. My husband says, "Go on in to work
and try to get in to see the doctor. I know he doesn't understand how much pain I'm in most of the time. I know I have to keep going or I will really get stoved up. I work,
am active in my chruch and sing in a Sweet Adelines Chorus. The one thing that helps
is that I have a wonderful support group through my church and the many prayer
warriors I have praying for me helps so much.
I was diagnosed at 23 years old with RA. I don't know what medications you have tried, but my doctor put me on Humira and methotrexate. I would also take celebrex for pain as needed, along with folic acid and vitamin D. After two years I felt completely cured so I stopped taking my medicine. Now, at 26, my symptoms have returned but are even worse now. So, if I were you I would definetly explore medications, they are life savers, but stay on them because when you get off the symptoms do return and you can cause more damage. And like the others have said, when you feel tired, rest. You know your body and your limitations. But stay as active as you can because keeping your joints active and building muscle can help you live a healthy life much longer. Good luck!
Do not pay any attention to anyone that says your arthritis cannot be that progressed at 26, that is by far one of the stupidest statements that I have ever heard or read. Rheumatoid Arthritis does not decide what age you are as to how bad it will affect you. Tell your boyfriend's family that you have RA and that you do not have it under control yet. Print out information on RA so they will understand it and if they do not understand or try to understand what you are going through then just stay away from them so they do not bring you down. You feel bad enough when you are in pain and suffering from the fatigue that RA causes to let anyone make you feel worse.
Too many people watch the commercials for RA medication on TV and believe that all you have to do is take whatever is being advertised and you are 100% recovered. You do not respond to medication as fast as the commercials imply and not everyone can take the medications that are advertised on TV or want to them because of the side effects. Good luck with getting your RA under control and do not let any make you feel quilty or embarrassed about your condition.
I agree with you especially about the part no one knows how bad you feel but you and the part about it couldn't have progressed that far at 28 is not true. I am 54 and I have it throughout my body, spine etc and last year my doctor found it in my chest. I Began pain at 17, I have been on treatment to slow it down but the side effects of the medication got to much. I work at home and go to school on line. I rest when I can and exercise whe I am not having a flare. Exercise is any form of activity even everyday activities. I cannot open jars or tear open those easy to tear packages and I have detoration in my hands due to muscle lost and where the mucle once was id sagging looking skin but i improvise and cut the packages with a knife when I lay it on a cutting board and slice it. You keep on going the best you can and never give up. A hint ablout jars: I turn the jar upside on the counter and break the seal with a butter knife. I learn to improvise. It runs in my family too
Hi Jessica: First, I want to say in response to Margaret's comment about 'you cannot be that progressed at 26' - please ignore that. I am 38 years old and have been fighting this disease for years in which time I have had weeks to which I cannot walk, open jars, brush my teeth, walk stairs, go to work, cook or even open my jaw wide enough to eat. Everyone's experience is different and you can absolutely be very progressed in this disease at any age. Secondly, I too have had experience with comments of being lazy. I hold a full time job and many nights when I come home I simply need to rest my body when I should probably be doing housework or making dinner. However, I don't feel guilty on those evenings and I certainly won't put up with anyone insinuating that I'm lazy. Take it one day at a time and listen to your body. It's hard to make people who don't experience this pain understand what it feels like, so sometimes you just have to stop trying and just worry about yourself and not so much of what others are thinking.
I was diagnosed with severe RA in january of 08, I am 31. I was told that if I did not do anything about it...to help myself. Then I would be crippled by the end of the year. My body feels like I've been in a 'flare" since I was diagnosed. After 6mo. I finally found a combination that takes the edge off. Yet I still cant do MANY things I could before. My family is very understanding...I'm lucky for that. But I too get funny looks and dumb comments about not looking like i'm "sick." I am a bit of a smart alec..I reply with some quick replies (but not mean) just to make them realize that, their comments are not needed. ((My huny and I were getting out of the car one day (I have a handicap sticker, for the bad days) A woman that is aquianted with my huny made the comment.."You dont look handicaped!"..So I smiled at her and said.."I wish i wasn't!" and walked on by. She stood quietly and her husband told her to "behave".)) In the simplicity of it all, I dint explain anything to her but I made her realize that she should think before she makes rude comments.
but as for family members i usually try to give them examples of how i feel that may relate to something they've done. Such as I told my cousin..."you know when you work out really really hard and every muscle is completely sore the next couple days....thats how i usually feel everyday." It helps to find something they can relate to. i did try handing out information but they never read it...lol. But one thing my family did was a lot of research on my situation...we have a lot of health professionals in our family so their a lil more understanding of my situation. I hope I helped you in some way.
I've read all these posts and agree with most. So saying that, there is only one person you need on your side and that is your boy friend. He will be the one to see
you at your worst and at your best.
I know this because it was my mother who could'nt or would'nt understand. Her ansewer was you have irish blood in your veins. so buck-up and ignor your pain. So I stoped
taking my meds.for a few years.But as eveyone knows bad idea. Finely I had gone to my family doctor I couldn't take it any more. I wanted to put a gun to my head, so he put me pain meds sent me to a speicalist. That was 5yrs ago. Mother still didn't know until a few days before my fathers death.I had to fly to fla. And when I tried to get out of the taxi and I needed help. She finely started to ask questions about RA. this was sept 2008. oct 2008 I had knee surgery and the damage is from the RA. So tell them what you have and if they don't care. Tell them to piss off and live your lives.Because you only have one life live. and no regrets.
Hi Jessica! I know exactly what you're going thru. I'm 21 and I have severe rheumatoid arthritis. My hands are severely deformed-Fact is, RA progresses differently for everyone. I was a guinea pig for years for my doctors. I've had RA since I was 16 and my doctor kept telling me to take ibuprofen, meanwhile my hand pain got worse and my hair kept falling out. I'm afraid of dating because I don't know how to explain to a man what RA is. :-P Dating is already stressful enough, try having deformed hands that you can't hide...It's best to be honest and upfront with people about having RA. Let them know your limitations and leave it at that. I know what its like to be told your lazy though. Try being 16 years old in excruciating pain and everyone around you telling you you're faking it and just don't want to work or go to high school. It's hard. You'll become much more confident in who you are in time because of RA though. :-) I have
i agree with most of the above posts. we have to learn to play the hand of cards that we were delt and a big part of that is learning to not let the opinions of others bother us. remember that you are not alone. n age has nothing to do with how bad your RA is.. i am 20 yrs old. i was diagnosed with RA when i was 17. my disease progressed rapidly over the past year. both of my wrists are deformed and i need surgery. i have had my knees drained countless times. cortisone shot after cortisone shot. for months i couldnt walk, dress, get up, or even get on/off the toilet by myself.. i do physical therapy and pool therapy to try and insure i dont completely loose my mobility. many people that dont understand our disease underestimate it. i am thin and "attractive" on the outside. therefore people underestimate how bad i hurt inside. we have to learn to play the cards that we were dealt. a big part of that is learning to not the opinion of others get to us.
I would just tell them what you have, and if they don't know about RA explain to them the best you can. Just let them know about your pains etc... Do not be hidding it.I have RA for 7 years now ,sometimes it is hard and not easy to talk about it. But it is important for your moral.
Just tell them what you have and that it may limit some things you are unable to do. I just went through the same thing in May with my boyfriend (I am 28 and have had RA for six years), he moved down to the city I'm in to be with me and we had to move what he didn't bring here to his parents house. They understood and didn't mind at all, I felt bad for not being able to help, but in the end, you have to do what is best for you, you have to protect your joints and body.
If you have a job, do the same thing there, as well. I've learned that people are more understanding that I thought they were and it's really helped me when there are things I just can't do. For example, my supersvisor wanted me to help her move some very heavy file cabinets this morning, she knew I couldn't do this, so I stood off to the side while another coworker who was able to move the files did so. I would also say take a stance if someone is pushing you to do something that you know you physically are not able to do, sometimes you have to be assertive.
If you educate people on RA and what it does to the body, they really get a picture of what it is you deal with on a daily basis. I've found with me, I put more pressure on myself thinking that I can do the same things I did prior to becoming "sick"...I've slowly (and still am) realizing that although I am limited in what I can do, there's nothing stopping me from accomplishing the goals that I want in life. RA also makes you creative! In order to better function, you learn to use your resources to open, move, etc. things that you can no longer do as well as you use to. You also get to research all kinds of RA friendly gadgets! There are some neat items out there!