What do you wish people understood about arthritis?

I have the same problem. At the beginning of the year we got a roommate and it's something I don't recommend! My roommate will say things like "I'm not here to b ur caregiver" and I'm the one holding my husband back he says these thingS in mid-argument and then is quick to take it back an act like he never said it but by then it's to late I dont want to argue. Last night I finally told my husband the things he would say and he agrees that asking him to leave is the best thing for us. Unfortunately he's fully intending to stay to the very last day I don't know what to do my husband works all day and he says things to me every time he gets a chance.

I try not to b difficult but It feels like he's not trying to understand. Any suggestions? I really need help so if u need more info about my situation PLZ ask.

That I didn't ask for this.

I think it is a lack of understanding of chronic diseases. During the height of my ulcerative colitis and arthritic condition flare my husband said if you would just exercise you would feel better. He didn't understand that all the inflimation throughout my body had to go down and I had to start feeling better before I could start exercising. I could barely move without out enormous pain from either my joints or my abdomen, how could I get up and exercise!

I wish they understood why it makes me so angry and frustrated.

For one thing I'd like people to understand that every day is different. One day we may feel almost normal and the next day everything is a struggle. I walk with a cane but around the house I don't need it because walking on wood floors covered with carpet has very little impact. This makes my in laws think I'm faking. Walking with a cane is inconvenient at the very least add to that painful hands and elbows it becomes almost unbearable. I am not lazy but I must be wise in choosing activities due to the fact that it could result in pain later on. I used to be able to ignore the pain because I could recover in a relatively short period of time. As I've gotten older the pain is greater and the recovery time has increased.

I two do not use my cane in my home unless I am have a very bad day. I have thing I can hold on to keep myself up and walking. Tell them to get a life…

I just wished people were more informed of of all the inflammatory arthritis types and related arthritis, and to not doscriminate just because you are young and say you have arthritis. It affects many many younger people in our 20's,30's sometimes even younger. People don't believe me alot of the time. So I've stopped telling people. It's none of their business anyway really :-)

I've had it since I was in my mid twenties and people look at me like I'm crazy when I tell them sometimes. Totally hear what you're saying.

If only people had more compassion for the disabled! I wish family members would understand how difficult it is to ask for help for things most can do with ease. It is so humiliating for the sufferer. Sometimes I just don't ask, even though I have to let something go undone. I know my family loves me, but I don't feel respected when others get impatient with my struggles. I have separated myself emotionally from my sisters because it is too painful to relate to them, knowing they think I am exaggerating my disability.

I think most of us are looking for UNDERSTANDING, NOT pity. Pity will not
heal anyone & in my mind is a useless thing. However understanding
is some thing we all need at times even those of us who are not sick-
need it too. To be human, is to need understanding. I believe most
problems stem from lack of understanding, not necessarily lack of
compassion. Unfortunitly, we are the ones who can educate those
around us, (I say unfortunatly bc sometimes we just are too darn
tired!) w/ all the pain. Sometimes, I think we just wish they would
"just get it", but I know that isn't whats going to happen. I think
the hardest thing for people to understand is how these illnesses
can & do change from day to day- or even minute to minute. So, I
think the only way I know is to keep reminding them when necessary
that "I don't have control over this". Because of the changing nature
of these illnesses, I think people assume that it SHOULD stay the same-
NOTHING stays the same as far as I know. It is extremely difficult &
tiring to try to help people understand. But, we are the ones who
need to. I believe education is the key.
hugs, marieanne

Yes, when I was in a bad flare at Christmas the most annoying thing I could hear was my sister in law saying we are doing this to spare your poor little hands. Understand me and accept me but don't pity me. Luv ya Marienne.

Redorangedog, When I bought my Shape Up's, I had to learn how to walk in them. Sometimes I stumble over my own feet when I wear them. You really need a strong sense of balance to wear them without falling over your own feet. They are nice for tightening up you gleuteous muscles while walking.
My Rheumatologist did a blood test to check my level of Vitamin D. I was surprised to see how low it was. Even though I spend very little time in the sun, wear protective sun clothing, long sleeve shirts and hats, and wear sunblock on any exposed area which is only my face. I don't like the sun it makes me feel sick. SLE makes you photosensitive. He placed me on Vitamin D and D3 at 1,000 IU daily. The level went up gradually throughout the last two years. It is now therapeutic for cardiac care. As the level goes up from the hundreds to the thousands, it becomes therapeutic for different systems in your body. I feel a difference in my strength and my posture have become noticeably better. Red

I completely agree! It is so refreshing to meet a group of people who help us take responsibility for ourselves and educating others. Yes, I would love for everyone to understand my plight, but no one walks in my shoes. (God help them! I still wear heals sometimes!!! ;))!!! They don't understand breast cancer or diabetes either…it is me who knows, me who does the research, me who is responsible for telling them if I want them to and if they care! Most people are so caught up in their own drama that yours is just the sprinkles on the icing on the cake. Furthermore how can we expect them to comprehend a young, seeming healthy woman with "grandmaw's rheumatism" this is not a publicized disease like diabetes or breast cancer. We MUST speak out and tell people so their eyes are opened and no longer are they ignorant. One last thing, when you think you are alone and no one knows your situation think of this… My 8 year old God-daughter came to me last weekend and asked how a little boy in her 3 rd grade class (he is 9) could have breast cancer…who is going to understand him…who is going to help him cope…no girl power t-shirt or pink ribbon will do it for this little boy! We ALL must practice understanding of everything ESPECIALLY when it does not fit.
"
Be the change you want to see in the world. Ghandi"
Peace )

Jenny,

I think that the idea of being caught up in their own drama has to with the modernized concept of individualism. In the U.S., it is a me-me kind of world. In other counties, they focus on a collectivism perspective where it is a we kind of world. You are right about RA not being so publicized. Even celebrities are hesitant to speak up because of the stigma we associate with it. You are right about practicing understanding – we have to speak it to our kids and practice it ourselves in order to accept what does not fit.

Yes! It is all about me-me-me, not we-we-we…when our spirits are connected and internally we know it takes all of us helping each other and loving each other to make this journey. We are put on this earth to take part in a glorious experience of life with so many interesting and wonderful people if we will open ours hearts to all of our differences we will see we really aren't so different!
It is saddening that you cannot tell your bosses. If your companies more than 50 employees then the government protects your job through FMLA. You prob already knew that. At least that would help for 12 weeks a year!
Peace

I know it but it isn't about protecting my job. It is about protecting their opinion of me. I am sure that you can relate to that.

Absolutely!! It shouldn't be that way and I pray one day we live where it isn't! That can be said for many things!!!

Absolutely!! It shouldn't be that way and I pray one day we live where it isn't! That can be said for many things!!!

My job knows I have OA but I just found out in the past few weeks that I also have RA but I cannot tell them be cause it would hurt my job. Sad isn't it!

Many of my coworkers know I have RA. My boss doesn’t and I want to keep it that way. I am sure he will eventually hear it through the grapevine if he has not already but there are some things that are better not said out loud.

I feel so alone in my diagnoses!!! My family just don't get it. One day I'm fine the next I can't move. HELLO!!!! RA AND FIBRO!!!! I'm not feeling sorry for myself, just wish they would understand!!!! I'm on methotrexate weekly and take Tylenol arthritis daily. I'm just wiped out with it all…I'm at my breaking point!!!!!!!!!

I feel so alone in my diagnoses!!! My family just don't get it. One day I'm fine the next I can't move. HELLO!!!! RA AND FIBRO!!!! I'm not feeling sorry for myself, just wish they would understand!!!! I'm on methotrexate weekly and take Tylenol arthritis daily. I'm just wiped out with it all…I'm at my breaking point!!!!!!!!!

I used to have to take Methotrexate once a week and the day or two after , you would feel like you had the flu with the flu like symptoms. I went through it for a couple of years. And as for Tylenol arthritis, does it really help? I know exactly where you're coming from, Tekismommy. It's very hard to get your family and friends to understand cause on the outside you look find. There is a booklet out there called "But you look good". It was written by a husband and wife (the wife with the invisible illness) to try and convey to their family and friends exactly what she was going through in her illness. There is a small cost. I think around $5 for the booklet, but it is worth it. I ordered it and gave it to my husband (who was in a HUGE stage of denial) , my mother , (who thought I should just be getting better and her solution was I wasn't getting out enough- she didn't realize how much it took out of me just to get ready and get out and then collapse when I got home!) , and also my 3 sons (who just didn't have a clue at ages 18, 15 & 13 and didn't understand what their mom was going through). I also passed it on to several others like my sister and friends. This booklet contains a lot of good information that relays exactly what you are going through and what can't be seen by the naked eye. Try it …check it out anyway… here's the link. It may help .

http://sherriconnell.com/but-you-look-good/

Same here, it's just getting harder and harder.

I have arthritis, fibromyalgia, degenerative joint and my daughter had a talk with my doctor and ask her to take my pain meds way. Oh my how I suffered today as strong storms came through. Because of my daughter, her doctor who was the one she talked to into going to, marked me as addicted to pain meds. Now I have nothing to take.

I don't know what to do since my daughter does not understand my pain.

Had I been addicted taking me off them all at once would have sent me in a tail spin which it did not. No with drawal symptoms at all.

PEOPLE NEED TO UNDERSTAND OUR PAIN. Now no one will help me. Combined with fibromyalgia too I am totally immoblie on days like this due to pain.

I do not use prescription medication for my pain, I take a Tylenol occasionally.
I seem to have a high tolerance to pain. Before I had my knee's replaced, doctor told me he didn't know how I coped with the pain..I seemed that I had been living with it so long that blocked it out.

OMG!! Someone needs to talk to your daughter! I don't know how I would get out of bed w/o pain meds. I have tried everything to avoid pain med, and some things do help a little at times and not at all at other times. But pain med is a necessay staple of RA therapy. I will be praying for you. Artielle

Same here with out pain med arthritis creams which my wife hates I woldnt make it. My family is always worried I will get addicted , but I try and be careful about that.

I am particularly frustrated right now because my family keeps asking me why I hurt when I just got my infusion earlier this week!!!! ARGGH! They seem to believe that the infusion cures it - not that it just improved the situation for awhile. I wish my family understood better. I have to explain this repeatedly. They don't get it.

That i'm not the energizer bunny!I don't keep going and going.When i say i'm done.. that means quite griping at me to do something.Let me rest!I feel that since my things are internal some people don't understand.I have arthritis/tendonitis.I tell people remember wizard of oz and the tin man?I'm tin woman with no oil.Especially cold weather.Some people don't understand.I try my best to do things myself.I am getting worse now that i'm in my mid thirties.I have dealth with a/t for many years now.I ask for help now.I worked in fast food for nearly ten years as a team trainer not including my other jobs i've held.I've had to deal with sarcastic comments from random people.I get depressed at times as I can't cook like I love to do or dance like i used to.I can't pick up my niece and pretend shes flying in air like I used to as my body won't let me.I'm slowing down.I take naps whenever possible.I wake up exhausted at times.I'm in constant pain every day now.It flares up worse randomly.I quit my volunteer things to take care of me.

I feel exactly the same. My boss does not understand that I can't do now what I was able to before. I'm slowly losing my job and I don't know what to do anymore. It's very depressing. Most days I just want to crawl into a ball and cry till I can't cry anymore.

That was my yesterday, calling into work to tell them for the third day this week I couldn't make it in and then promptly breaking down completely for an hour. I feel like I am losing everything all at once. Your certainly not alone and hopefully it will get better for all of us in this position. Hugs

I do not think people understand the depth of the pain and how badly disabling it truly is. But as stated how could they if they do not have it.

I wish that others would consider the possibility that their narrow minded attitudes can be hurtful to those already in pain. What you believe about any given subject such as arthritis is your personal opinion. This opinion is yours alone. Others may share in some of your beliefs, or they may not. This makes us all human, different, and interesting. If we, as human beings open our hearts and have compassion for others and respect for their personal views we all win. If we make judgements based on personal beliefs we loose. Compassion and an open mind can go a long way towards easing the suffering of another. It is prudent to tread carefully when choosing words that may affect the life of another. Words have power, they can help or they can hurt. Many of these posts share feelings of sadness caused by people who throw out opinions as if they were putting out the trash, without thought or true understanding. It hurts my heart for us all.

you are such a beuatiful. considerate person, If your way of thinking could be bottled, sold or given away as I believe you would do, the world a better place for everyone…I say add it to the drinking water.

I suppose you must think everything is curable, because you made this same statement on the diabetic network. i just wonder what your unthoughtful motives may be.

I've had pain for many years and have had great success keeping it to a minimum without the use of drugs; however, it is a degenerative disease and before long I will REQUIRE the pain meds that I have avoided for so long. Arthritis as well as diabetes can be controlled not cured.

I wish people would realize it is totally preventable and totally curable despite what so called modern medicine says about it. Drugs while easing symptoms does nothing to stop the disease and makes it worse. Drugs cure nothing, drugs treat symptoms and drugs destroy the body.

egbrown I understand everyone is entitled to their opinion, and that's yours. Well sir I hate to tell you you caught me on the wrong day. I spent my 6th sleepless night due to the cronic pain. If you are arthritis free you never had it! It is uncurable. You have no other health issues listed like the rest of us so you are damn lucky! Do yo stand on a wooden soap box with a banner reading Dr Browns Cure All and Wood Polish!! Knock it of, you are a know it all, that seems too know nothing! If you develope arthritis come back and tell us about it then!!!

hello egbrown, i am curious about ur situation or stance on disease and wellness. Do u have a degree in hollistic medicine, chiropractic, nutrition, ??? just for a better understanding do u feel healing is also related to God also?

I visited your page and you don't list any health conditions, which I find hard to believe. You dole out advice and recommendations which brings me to the question..Are you an arthritis specialist or a doctor of internal medicine?

I agree with you compleatly. I see it as a person who never votes at the election then spends all of their time complaining about the way it all turns out..LAY YOUR CARDS ON THE TABLE…YOU'VE BEEN CALLED ON

Forget this guy. He's been on other sites too & has never been able or willing to give us any proof of anything he says.

egbrown, please go peddle your juice somewhere else…you are dishonest and disheartening to everyone here. I would gladly go toe to toe with you on your so-called "healthy diet cure". I am a very healthy eater that has RA. If your theory is true, 99% of people in our country would be stricken with it. We don't want you here. You are counterproductive to those of us trying to live with our disease THAT HAS NO KNOWN CURE. Try the Jerry Springer Show.

Please Mr. Brown, find some compassion for those of us who don't agree with your personal opinion. There are times in my life when drugs are necessary to help me deal with an incredible amount of pain. Your statements of negativity regarding medications that are often necessary to help me function and work are hurtful. No one can truly understand what another must suffer. I must assume that what you discuss here works well for you and that is good for you. I just hope that you would consider having empathy for others.

Again, we will ask you to not make such incredible claims without providing some kind of evidence. What are your facts? Watching a DVD or finding something posted on "Shirley's Wellness Cafe" is certainly not any more reliable than studies produced by drug companies. Just because you like the message better doesn't make it more true.

Shirley's own website includes this disclaimer: "The information in this web site is presented for the educational and free exchange of ideas and speech in relation to health and wellness only. It is not intended to diagnose any physical or mental condition, or to prescribe or promote any particular product(s). It is not intended as a substitute for the advice and treatment of a licensed professional."

Mr. Brown, you continue to act as if you have the knowledge and expertise to diagnose and prescribe treatment for everyone. Do you know how presumptuous and misinformed that appears to everyone else?

We're totally open to an honest discussion about all kinds of approaches—including dietary changes that might help. But when you throw out things like "totally preventable and totally curable" you make it impossible for anyone to take you seriously.

talltennisgal said what I wish I could have said. I find myself so emotionally invested in certain statements that I don't trust myself to comment. Tread lightly with your words, they have power. I say it over and over again to those I love because I was never born with the armor to protect my heart from the ugliness around me. I know the damage that can be caused by careless statements. Thanks Tennis gal, I love you Drew

I love you, too, Drew. I have never been real shy, but I find the post-50, post-menopausal me will speak my mind when I feel it's called for! I come from a long line of opinionated women. lol

Thanks for saying all this, John. I am sick and tired of Mr. Brown's posts. Did you notice that he doesn't share if he has arthritis or not? I, like you, find it insulting when someone, especially if he doesn't even HAVE arthritis, is spouting claims that this RA problem is really just a shortage of one 30-day juice fast in our lives. Give me a break. I had already reported this guy to the board. I don't think his posts are helpful at all, and in fact may prevent someone with early RA from getting the help they need.

This brown guy has been on diabetic connect too. Funny in his list here he didn't even mention diabetes. Now, I'm no light weight yet(working on it) but seems to me from the looks of his chubby cheeks he's not following a Raw Food diet.

Ditto — think I've run into him or someone like him on diabetic connect as well. It's demeaning to those of us who suffer from any kind of disease/disorder to be told that we could have prevented it or that it can be cured when all science tells us different. Old wives tales such as those in this day and age …!

Anyway - to address the topic

I really wish that people would/could understand that just because I felt good yesterday and was able to do more that I may not be able to today. So often I hear "but you don't look sick" and that makes me "sick" well irritated would probably be a better choice of words here LOL At least my husband understands and supports me and will often tell people that make comments like that to me that they need to have my body for a week lmao - he says that on a bad day they'd give it back in less than an hour :) Some days I can get along without even my cane for help and on others I need a wheelchair. Though my pain on a daily basis is about 2.5 - 3 on a really bad day it can go as high as 9 - 10 (today it's about a 6 - we have storms through though not really horrid ones).

I also wish that more people would realize and accept that for many of us weather really is an issue. I have several friends who also have arthritis that like myself are at least as good weather forecasters as any on TV and sometimes better. I used to wonder as a child how my g'pa always knew what the weather was going to be (and extremely accurate too) — now I'm finding out and wish I didn't know :( I also find that I suffer worst in really hot weather especially when it's also humid - normal summer weather here in TN LOL I know some others who have that same reaction and also others who suffer more in cold. As with many things we each have our own reaction to things which many people don't understand either. I hate it when someone says something like: "how can that be, cause my … has that and s/he …!" (fill in the blank with whatever you may have heard or maybe even said to someone as I've even had people use themselves as a gauge as to what someone else "should" feel/be).

I try my best to not judge how someone else 'should' feel by how I feel and to remain open-minded as I wish others were. I guess that would be my greatest wish - for others to be open-minded and not judgmental about people and their illnesses/disorders etc. and how they may "look" as looks doesn't tell even 1/2 the story.

Hugs to y'all
Gemm

Hug's to you to Gemm, you're a trooper!

There is NO CURE for arthritis. There is control for arthritis.

I wish people understood that not all disabilities are obvious to look at.

When I go shopping and park in a handicapped space, I've heard all sorts of comments basically boiling down to how I don't look disabled and they want the name of my dr. so they can get a "lazy parking pass". If the same people could be around to see me come out in 20 or 30 minutes, they'd see why I need it.

jvbs,You hit the nail on the head,What I hate is when people tell you to smile
and it's hard to because of the pain and when your finally able to smile they look at you as there is nothing wrong with you.

That is just wrong on so many levels!

I totally understand ,jvbs. I feel the same way. I too have had the stares. I have arthritis, degenerative disc disease with chronic neuropathy and find it difficult to walk long distances. Will we ever reach the point in this world where no one is judged by others?

Gramma615, I understand, we have the same ailments. Jvbs and gramma i get the same looks. I am so tired of it!!!!!! one day a group of nicely dressed ladies had to wait for me to get out of the car(they parked on top of us). I was getting the looks when they got out. I heard one say something and look at me. I lost It. I told her if she had something to say say it to me. she looked surprised when I opened my coat to reveal 2 bionic looking knee braces. I simply ask her holding my cane towards her,"do you think we chose this life? Have you ever wondered what you would do if it was you. Take my advice lady enjoy the fact you can walk from the back of the parking lot. You may not be able to tomorrow". I then walked around them into the mall.

My youngest daughter doesn't hesitate to tell off people ( and not politely) that they have right to judge me. And, by the way, in the state of California, you do not have to disclose your illness to these people. I tell them I will call the police for them, and they can wait a long time for them to arrive. Only to the police do I have to disclose. It's your right to privacy! Same at an airport! Check with your state

You go girl!!!! Keep you're head up !!!

My SIL has had both her legs amputated from the knee down due to circulation problems. While waiting for her prothtesis to be made, one day my brother drove into a handicap space. He got out & started walking briskly to the trunk of the car. Even though he had the placard hanging from the mirror, a lady walking passed said very loudly, "I hate it when people park in handicap spaces when they don't need to. "To which he replied as he lifted the wheel chair from the trunk, "And I hate it when people use their mouths instead of their eyes."

I wish people understood the pain you endure when you have any form of arthritis. Sometimes I think it is indescribable. You are not suppose to complain but sometimes is so very hard…

I think I'm one of those people that didn't understand arthritis. I have had arthritis for as long as I can remember. I didn't know what it was, to me it was just another pain I had to live with. I didn't see a doctor I didn't take meds only some tylenol once in a while. 3 years ago I was diagnosed with diabities. that's when things started to go down hill for me. it was like almost over night all these pains I had been holding back I couldn't hold them back any longer. now I have been diagnosed with depression, bipolar , arthritis, and degenerative disks in my back. its my own fault for waiting to get the help I needed and I sure need it now. I hid it from my job for many years, now its starting to come out in my performance and production. the arthritis is in my ankles and I have to do a lot of walking for work, when I get home my ankles are all swollen and I can hardly walk. I want to be able to get to the point where I can retire but I'm not so sure I'll make that. I try to talk to a couple of my co-workers about it and its like they are listening to me but not hearing what I am saying. my wife is something else she takes care of me. If I didn't have her god only knows where I would be and what I would be doing.
scott

I too tried to hide my pain at work. Doctors never helped for the longest time. Gave me celebrex, but that ended up not working. I lived with it. Then depression kicked in. One day a coworker saw my "hiding" the pain and asked what was wrong (it was an exceptionally bad day). Told her, she recommended vitimin d. Since there were no side effects I started taking 2,000 a day. Within 8 days I started feeling better. I also decided to buy those "ugly" Sketcher Shapeups. I feel so much better it was amazing! I do see a chiropractor and that helps too. I went off the vitimin d to see if it was a fluke. NO it WASN"T. I am now at 5,000 a day and am amazed. I only take tylenol when I have done gardening or too much walking and I can't tolerate the pain. The Sketchers are well worth the money. It did take me about 2 weeks to get used to them. (My butt muscles sure did hurt). But for something so simple to alleviate so much pain, I tell everyone. It's worth the chance to try. I believe that unless one has arthritis, they usually don't understand and they aren't concerned. The depression caught me by surprise. Living with such pain, no help in sight and no understanding I believe is what led me to depression. May God bless you in your journey to recovery.

Oh I love mine!!! I have to have knee replacement so I thought it might help strengthen my legs before I give in to it. My feet and calves don't hurt near as bad as they did when I walk. lol I'll let you know if they turn me into wonder woman!!!

I found the shape ups really helped me with pain as well. They do take a bit of getting used to, but my feet and ankles don't hurt at all when I wear them and it's also helped with my other joint pain. But they are kind of ugly and clucky feeling.

I have debated getting a pair of the Shape Ups but the price is more than I can handle. It sounds, however, they are worth the price. Why don't you put up a review under product reviews so that other members can learn about them and how they have benefited you. Also, please feel free to post a discussion about your Vitamin D experince.

I was diagnosed with arthritis at age 9; I am going to be 52 in a couple of weeks. My family does not get it at all! (My grandmother was bedridden with debilitating arthritis by the time she was about 70. I believe that one of my first cousins and I are the only ones in the family who have been stricken.) I am EXHAUSTED all the time! I work full-time and there have been weekends where I have slept 20-hours straight and I feel GREAT when I wake up. No one in my family understands this intense need for sleep and, though I have tried to explain how arthritis affects the immune system, which I believe causes my chronic sleepiness, they think there's something mentally wrong with me!

I also work full time and understand what you are saying completely. I am so tired my days off I sleep alot. My uncle and his grandson both have RA, So my family is alittle supportative. They suggested that I try for disability, but my doctor said as long as she can work it was a better thing even if i sleep my days off away. I'm 51 and have ra and os and, long as i can do what is necessary i will; one of my doctors advised me of this, because i can't alway get my house work done she said" Feed the dust bunnies so the human society won't get you and call the rest modern mode, and enjoy" I go to work which i enjoy and the rest is just there.

I agree with what everyone else has said especially feeling tired. I work full time, I am 64 years old and was diagonised 3 years ago. Some days I am completely exhausted.

I wish people understood that RA is not just about pain and swollen joints but that it is so exhausting too. I am trying to keep working but by the time I get home each day I am too tired to do much of anything. That makes it hard because I know I need to get out and walk because it is ultimately the best thing for me. Also, the meds weaken my immune system and sometimes I get infections that keep me home and I know people I work with just don't "get it". Unless they have been through it or know someone who has, they have a very hard time understanding that RA is more than swollen joints…

I wish people understood that arthritis does not show age discrimination. Arthritis can attack anyone regardless of age.

Things that people do not understand is that you have to plan accordingly. Your comfort or discomfort dictates what you can and can not do. Physical activities and travel can be greatly interrupted depending on the pain you are experiencing that moment or that day.

Thank you for the topic. =)

I have had RA since the age of 24 and am going to be 56 in October. I have had two wrist surgeries for ruptured tendons and both hips and knees replaced. It has been very challenging, but the worst part for me has been losing the dexterity in my hands. In the last 5 years we have accumulated 7 grandkids, and as babies, I have not been able to pick them up, change their diapers, or babysit them unless my husband is home. Looking at my wrists and hands, even strangers know there is something wrong and are usually very gracious in dealing with me and my limited 'ABILITIES'. However, where I run into the most discrimination is actually in handicapped parking. People are always giving you the LOOK, and it is usually from other people w/disabilities. I truly try not to judge, because sometimes you can't see a disability-diabetes, heart disease, cancer, whatever. I wish people understood that we have good days, where maybe there is no limping or limited amounts of pain, and other days, when you can barely get out of bed and make that cup of tea or coffee in the morning. I call arthritis a disease of motion. You can't have too little or you get ouchy and you can't have too much or you pay for days. When I have a good day, I tend to overdue, cause I don't know when I will get my chores and errands done otherwise. I retired from my banking job of over 12 years this past December and it was the hardest thing I have ever done. I loved my co-workers, customers and job, but my hands took all that away from me, and admitting it was time, was very rough. However i have adjusted well and thank GOD, no one has ever called me lazy. I would really have to take them out if they did. I do what I can, when I can, and my family friends respect that. You have to look for all the little blessings you get in this crazy life and I do that on a daily basis. God bless all of you with your efforts to live with this awful disease.

I was diagnosed with RA about five years ago. It affects both hands, both wrists and I can't straighten out my left arm because the elbow is so swollen. I only have Medicare A & B, so I have to pay for all of my meds. The new biologics are so far out of reach that I know I won't be using them only because of the cost. Every time I see one of the commercials, they say if you have trouble paying for the meds, the pharmeceutical companies might be able to help. What a laugh! If you have Medicare and no other insurance, they don't want to know you. If they subsidize Medicare recipients meds, they might have to negotiate for a national buying system. Can't cut into the profits. Anyway, I feel exhausted all the time and I am losing ground with manual dexterity. Not going to quit though—I'm stubborn and I'll keep doing what i need to do.

As far as family is concerned, they have been great. Maybe it's because they can see how bad my hands are with the swelling and deformed joints. The only thing that really gets to me is when I meet new people and they want to shake hand. You get someone with a vise grip handshake and tears come to my eyes. I should consider myself lucky, at least I can still work part-time. All in all, I don't have as many bad days as I used to, just keep the tylenol on hand and excercise my hands as much as possible. I can live with the pain, it's just a question of having faith that God won't give me more than I can handle.

Thanks for listening and God bless!

On the first parents evening at my youngest daughters school I held out my hand and shook hands with her male teacher plus others, the next year I went I did the same and more male teachers proffered their hands to shake just my litttle stand why should it just be men…now when they hold out their hand I wont give in! just like you I hope they dont squeeze too tight how dare RA try to spoil my fun…