Tiffany you said it so perfectly! As much as I read and talk to others who have it I still feel so much better when the way I feel isn't just me. The muscle weakness, I thought that was me, but others have it too. It's hard to explain to people that your muscles just don't respond to what your brain is telling them to do. They just can't grasp it. Thanks for being there for us.
thank you thank you thank you now i have something to share with my family and friends to get a better understanding of what my life is like now. maybe they will learn from this and not just think im lazy or a hypochondriac anymore. i couldnt have put it into words like you did and now i have a way to explain it and show them its not just me its my ra. simply amazing article. im sharing on facebook and emailing it.
Family can be the toughest ones to explain all this to for sure they just see you as a non productive person now. I have become a recluse almost because I can't function like I use to and oh how my heart and mind want to be able to get out and join in the world around me! So to escape the unbelievable rude and downright mean remarks others say to me at times it's easier to stay in my four walls and function on my level. I accomplish what I can when I can and I stay as active as I can. I am not ready to fold up yet but it does take allot of effort as all of you know!
Family can be the toughest ones to explain all this to for sure they just see you as a non productive person now. I have become a recluse almost because I can't function like I use to and oh how my heart and mind want to be able to get out and join in the world around me! So to escape the unbelievable rude and downright mean remarks others say to me at times it's easier to stay in my four walls and function on my level. I accomplish what I can when I can and I stay as active as I can. I am not ready to fold up yet but it does take allot of effort as all of you know!
Brandy, how do I understand this...that's one of the reasons I decided to dedicate my life to advocacy, I just have to do my part to at least try to change this. If you ever have any ideas that you think could work to get through to people don't hesitate to let me know, I just may turn that into a post too!
Great article... but it needs to say you feel all these things and recover from them.. someone with RA feels these things 24/7
thank you for your insight :) ... I was reluctant to put the 24-7/7 days a week flare only because not everyone has a constant flare of flu/exhaustion/pain non-stop, so I chose 'chronic' instead. But maybe having added an astericks in there, then at the bottom stating that all RA has different degrees, depending on the person, treatments, longevity of the disease, etc., and that those degrees could be 24/7 7 days a week. I'll definitely keep an eye on that in the future, thanks for the suggestion!
Traci, thank you for such good information. It is funny how things work out.I am one of the lucky Ra people in that I don't have flares day in and out. (all though it would be nice to have a definition of a flare. I realize it is different for everyone). I can swim laps 4 times a week. I still work, I am a librarian so it is not hard labor.As I read everyones comments on here and RA Warrior, I realize there are many who suffer everyday of their life. It makes me feel guilty that my 8 pills of methotrexate has made my inflammation markers go down. I liked that you said that Ra is different for us all. My main question is how to describe pain to the doctor. Pain for me would be like stepping on glass or having a baby. Achey body is everyday but I manage and guess I am used to it. Thanks Again. Steph
Thank you everyone! I have RA myself (and systemic lupus) and I used to teach college for 8 years- as a teacher I always worked very hard to come up with interesting lectures that would help the students understand by relating the subject to their personal lives. This is the technique I used in this article. It was tricky trying to make it all-encompassing, since everyones RA is different, but I hope it provides a great educational resource that can be shared with friends, family, and those who you would like to understand more about your disease.
Thanks Martilla!
I am scheduled to do another after the 1st of the year, but the focus will be on misunderstanding RA in the media... if they'd take me on permanently I'd have a lot of fun doing a whole series on this. I mean, we have RA so we've gotta have fun with it as much as possible, right!!!???
Hi, Tiffany,
I really enjoyed reading your article. The people who genuinely care about us will listen and try to understand. Unfortunately, there are those, even in our own families, who are too self-absorbed to listen. My big complaint is with the television advertisements that seem to imply if you take this or that shot, or this or that pill, that you will be fine. Uh.......not so much! What are our friends and relatives to think when they see those ads, and then look at us, and see that we aren't "bouncing" back. Those ads do a disservice to all of us with autoimmune disorders.
Blessings,
V
Loved this perspective. The problem is if you're not completely deformed by RA then everyone looks at you like you're a fraud. "Well you don't look like anything's wrong." I have a constant limp now due to my ankles and knees. I can't put any pressure on my hands and wrists. And why is it none of us feel the complete relief as advertised in the biologic commercials. I've tried several. Energy level is slightly better but the pain, swelling, and stiffness is always there. It never goes away. Nor do the dry eyes, the decreased white blood count, etc., etc.
V, how funny you mention about the advertisements, that's MY biggest pet peeve too! I'm signed on to do one more post for MyRACentral which is going to be on misunderstandings in the media! Nothing gets me more than seeing someone who seemingly started their biologic and then they can run, jump, and play soccer. It's going to be a challenge to get the point across but I'm up for it!
this is so very good and it applies to other autoimmune arthritis as well - PsA as I have, AS based on what friends with it say, etc. I'm definitely sharing this on FB because we aren't all Phil Mickelson!
You are SOOOOO right- it DOES apply to AS, PsA, SLE, etc.... that's why I founded the International Autoimmune Arthritis Movement, in order to group together these diseases that are SOOOO similar! Isn't it amazing how closely related they are, yet they've never been grouped together in one place? We can learn so much from eachother. I know some of my friends in the AS and PsA communities reposted, and when I saw it I did try to comment that although it says "RA" it applies across the board. Great observation!
I don't know if you have control over the pictures that are displayed with the post, but it seems the people who are worn out from major exercise are male, whereas the ones suffering in bed or holding the head are women. I'm not usually sensitive to gender in this way, but it really hit me when I was deciding which thumbnail to go with on FB.
The images are TOUGH....I use istock and it actually took about 4 hours to find the 'right ones' that showed the physical part (and that were in my price range lol). I did try to find both male and female and racially diverse, but it did seem the best photos of the sports (that showed the emotion the best) were men. So while there were male photos in bed or being frustrated, I didn't want to overload the male photos. Photos are tricky, no doubt!!!
Ms. Westrich, this is the very best preliminary description of Rheumatoid Arthritis that I have ever read. I am full of gratitude as most people have no idea about the truth of living with Rheumatoid Arthritis. It does not descriminate in age or gender.
Your writing style is clear and easily understood. I hope that it will also encourage others without the disease to learn more as this terribly debilitating and painful disease can hit anyone from infants to those over 50, including men or women, although it appears statistically that far more women have RA than men.
I am in gratitude for all your efforts to bring awareness of Rheumatoid Arthritis and destroy the myths that only causes us who live with this chronic and advancing disease mental and emotional distress. I am also thankful for all your efforts as the founder of the International Autoimmune Arthritis Movement. (IAAM) There is so much more knowledge that is gained by your website.
I certainly look forward to your next article regarding RA.
In Gratitude,
AAL
AAL-
Thank you for your insight and comments. I definitely would like to write an article in the future focusing strictly on men with RA, just because I know it must be frustrating to be one of the men living with something so often affecting women. There have to be struggles men have as well that perhaps don't get as much exposure because many of the RA writers are female.
And re: the IAAM, I couldn't be more proud to be part of such a cutting-edge organization that is literally rebranding the way the world views these diseases. It is about time, isn't it! lol
So true, I even understand myself better now. I have had an especially bad few weeks, and realise how much emotional stresses increases my physical symptoms.
Thanks for this, it should hit national newspapers as an education tool.
First of all, LOVING your name! We ARE WonderWomen aren't we!? :)
I'm glad it helped you, as a patient, to gain insight and connect some dots. I've been fortunate to run an organization where I can talk with 1,000's of RA patients around the world so I feel like I learn something new every day- and now I can take that information, turn it into articles, and share that insight with all of you. It's quite a gift and certainly is enjoyable in this case to 'regift'!
Perfectly said...I have the hardest time explaining RA to my friends and family and your article has explained it as I know it! Thank you.
Gratefull thanks for a great article--I myself, even though having had RA for 55 years, really didn't know a lot about it until the internet came along, with Kelly Youngs' post and Lene's. I remember thinking so many times "Other people CAN'T be this exhausted" but I didn't quite put it together as being a common symptom of RA. The doctors weren't much help at all; in fact, even now, my rheumie does almost no education, and seems not to understand to test for function losses rather than cosmetics, i.e., don't just hold my hands out in front of me, ask me to pick up a penny or a credit card! Doh!
Gratefull thanks for a great article--I myself, even though having had RA for 55 years, really didn't know a lot about it until the internet came along, with Kelly Youngs' post and Lene's. I remember thinking so many times "Other people CAN'T be this exhausted" but I didn't quite put it together as being a common symptom of RA. The doctors weren't much help at all; in fact, even now, my rheumie does almost no education, and seems not to understand to test for function losses rather than cosmetics, i.e., don't just hold my hands out in front of me, ask me to pick up a penny or a credit card! Doh!
Isn't the internet amazing!!! I was able to start the 1st nonprofit in history to exclusively group together the Autoimmune Arthritis diseases because of the internet! Called the International Autoimmune Arthritis Movement (IAAM) we coined the phrase Autoimmune Arthritis in order to rebrand the old stigma of "arthritis", which we know just means joint pain. When that phrase started catching on we decided to make it an official nonprofit. We just got status in May...so with our organization created to raise global awareness and to unite all the existing nonprofits together to make even more waves, and with people like Lene and Kelly, hopefully you'll even see more and more changes happening very soon! :)
thank you for a great article. While I am not flaring now and haven't for about 6 months (summers are hardest for me). I have read this blog and many others on Rhuematoid I have never hurt like most of people that write articles. I appreciate everything that I read and find. but I would like to know if there are others that have milder rhuematoid. I know my doc started me early on medicine. Maybe it just for now the meds are working for me and I am grateful. But I kind of feel I am out there by myself and feel guilty when I read about others pain.
Keep on being as strong as you are. Meme
Hi Meme,
First thank you, I'm glad you enjoyed the article. And to answer your question, yes, there are many others who don't have chronic RA. I actually call it "level 1, level 2, level 3"...yes, it's so scientific! lol But level 1 are people who have literally one long flare, get the diagnosis and go into remission. It seems rare when you hear mostly about the chronic patients, but I know they exist. My uncle is one of them. While this would clearly be a blessing to have level 1, it's dangerous for awareness because some of the patients really believe that possibly some food they ate or some physical therapy they did, etc., "cured" them. And in saying that, anything is possible? Every persons body is different and we all react to therapies different, but it's dangerous to promote a quick fix to a person who isn't going to go into remission after one flare.
Then there's level 2, which is what I would classify yours as. These are people who aren't chronic. Level 3 is chronic- it never goes away entirely but the flares are the bouts of fevers/flu/feeling like you are winded and have been in an accident. It's harder to convince this group that there's something that's going to put all of this into remission.
So the answer to your question is yes, there are others out there and I've actually seen some of them post on IAAM's public facebook page, similar to what you are saying- that they feel bad sometimes that they don't have it like the majority. My guess is you aren't a minority, but those with level 3 are just screaming about it louder ;).
If you want to check out the page I'm talking about, and even post this question to see who is out there, feel free! https://www.facebook.com/InternationalAutoimmuneArthritisMovement
thank you for a great article. While I am not flaring now and haven't for about 6 months (summers are hardest for me). I have read this blog and many others on Rhuematoid I have never hurt like most of people that write articles. I appreciate everything that I read and find. but I would like to know if there are others that have milder rhuematoid. I know my doc started me early on medicine. Maybe it just for now the meds are working for me and I am grateful. But I kind of feel I am out there by myself and feel guilty when I read about others pain.
Keep on being as strong as you are. Meme
Hi Meme,
Yes, RA is different in every person- and this piece was written based on the most common level, or moderate to severe. Not everyone advances as quickly, or at all...there are actually some RA situations where a person may get ONE major outbreak and then never again. That actually happened to my uncle- LUCKY GUY! lol :) There are also many people who have intermittent RA, meaning they get flares and then feel pretty good in between those flares. That's mild to moderate. Also, it strongly depends on how quickly you were treated and how well your body reacts to those treatments. So if your RA is more under control don't feel bad- I understand why you may, but instead perhaps you can be a shining example for the medical community to show the difference in a person who was diagnosed and treated early. It can really make all the difference in the world!
Tiffany, you got it down to a T with this article. I have friends who haven't a clue what the score is with my RA and OA and like others said, just feel I'm "putting on" when I can't do all the things I once did and they are still alble to do. I'm on all the meds and keep going as best I can but feel as though I'm in a flare all the time. My right arm simply is so painful every minute of the day and night that I can barely move it. Of course I'm right handed and keep on using it with exclamations of pain throughout the day. Luckily I live alone so nobody else is listening to me moan and groan.
I sent your whole message to one friend who absolutely won't accept that I'm not the lively person I once was. I think he thinks it is all in my head.
you can explain to people all day long but they are never gonna understand or be able to imagine the living hell Ra causes. Unless you have actually got ra no one understands. They cannot feel it and to be honest none of the explanations written above really describe it. It is much more unbearable and scary then this. I have had ra for 6 years and it has been the worst unimaginable time.
Sue, I'm sorry the descriptions aren't relevant for your RA and your journey, I did my best based on my RA and the thousands who I've spoken to about what theirs feels like. Fortunately I've heard back from dozens who said this piece helped others to understand because they could relate to injuries and exhaustion, so the good news it did help some. Perhaps give it a chance to share and see if it makes a difference to help others understand; but if not that's ok too. If you can think of any other examples to use by all means we'd love to hear them- there's never only one way to write a piece on what RA feels like so maybe a part 2 is a possibility? :)
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Tiffany, thank you so much for such a well explained description of a complicated illness that is not only painful but debillitating in so many ways. Your examples were spot-on, and I hope they will help people who don't have the disease see it through it a new lens, with a fresh perspective, and hopefully with a bit more empathy for autoimmune sufferers they come in contact with in the future. BRAVO!
Thank you! I hope the article can be used to share with family and friends or even strangers who don't understand. I sincerely appreciate your comment, thank you!