8 Things Not To Say To Someone Who Has RA

When most people hear the word “arthritis” they probably picture a grandma who has trouble knitting or maybe a grandpa who walks with a cane. Most people don’t picture a mother chasing after her children, or a teenager at the mall with her friends, or a baby learning how to walk. But the reality is that all of these people can have forms of arthritis.

Confusion about the different types of arthritis, who is affected, and how it impacts their daily lives can often lead people to make well-meaning but ill-informed comments. Here is a list of eight things not to say to someone living with rheumatoid arthritis – and some facts you can offer in response if someone says these things to you.

1. You are too young to have arthritis.

The most common type of arthritis, osteoarthritis (OA), occurs when the cartilage between joints breaks down over time. Because this type of arthritis often worsens with age, it has created the stereotype that only old people get arthritis. But the reality is that of the 50 million Americans who have been diagnosed with some form of arthritis, two-thirds are younger than 65 and 300,000 of them are children. I was diagnosed with rheumatoid arthritis when I was 25 years and I have met children who were diagnosed with juvenile arthritis as toddlers.

2. My grandmother (or great aunt or other old person I know) has arthritis too.

More likely than not, your grandmother has osteoarthritis (OA). While potentially painful and life-altering, OA is not the same as autoimmune forms of arthritis such as rheumatoid arthritis (RA) or juvenile arthritis (JA). Autoimmune arthritis occurs when a person’s own immune system mistakenly attacks healthy joints. These types of arthritis are systemic, lifelong conditions with no cure. Personally it does not make me feel any better when someone tells me about a relative who has a completely different condition than I do!

3. But you don’t look sick!

Autoimmune forms of arthritis, like rheumatoid arthritis (RA) and juvenile arthritis (JA), are often invisible illnesses. A person may not show any outward signs of living with daily pain and fatigue. But someone who looks perfectly healthy may still be experiencing flare-ups of inflammation and pain or dealing with fatigue. Like other chronic diseases, RA and JA may fluctuate in severity from day to day, but it never goes away completely. I always try to put on a brave face for the world, but that doesn’t mean I’m not in pain on any given day.

4. Have you tried a gluten-free (or vegan or casein-free or nightshade-free) diet?

Unfortunately, treating RA is just not as simple as eating or not eating a certain food. While some people have found that following a particular diet may improve their RA symptoms, there is no scientific evidence to recommend any particular type of diet to treat RA. So while alternative diets are certainly worth a try, there’s no guarantee that they will help. For example, I tried being gluten-free for six months without any impact on my RA symptoms.

5. Have you tried glucosamine (or chondroitin sulfate or other natural supplement)?

Just as there is no particular diet that will cure RA, there is no natural supplement that is guaranteed to help with RA symptoms. In fact, most supplements that are generally recommended for arthritis – such as glucosamine or chondroitin sulfate – have only been studied in terms of their impact on OA, not RA. I personally take a fish oil supplement because there is some evidence that omega-3 fatty acids may help naturally decrease inflammation in the body. I figure this is worth a try, but it certainly has not cured my RA.

6. You take too much dangerous medicine.

RA is a serious autoimmune condition, and many of the immunosuppressant drugs prescribed to keep RA under control do in fact come with serious risks and side effects. However, there are also serious risks associated with having RA that is not properly treated. If not treated, RA can lead to permanent joint destruction as well as damage to other organs. Unsolicited criticism directed towards a person with a serious medical condition may make it more difficult for them to take the medications necessary to prevent long-term damage. I always tell people who are critical of my treatment choices that I carefully discuss the benefits and risks of my medications with my rheumatologist, who is an expert on the subject.

7. Now is the best time to have RA.

While this is factually true – RA treatment has indeed improved dramatically over the past few decades – it really doesn’t make it any easier to be diagnosed with RA today. Being diagnosed with RA is still a lifetime burden, particularly if you are diagnosed at a young age. I had a really hard time with this comment, particularly when I was first diagnosed. At the age of 25 it didn’t feel like a good time to have RA to me!

8. You just need to exercise more.

While exercise is certainly an important part of managing any type of arthritis, when RA flares exercise can be difficult, painful, or even impossible. Exercising during a flare may even lead to additional joint damage. When RA is controlled low-impact strengthening exercises can be very helpful, but no amount of exercise is going to cure RA. We do the best we can to stay active when our bodies allow, but the reality is that it just isn’t always possible.

Are there any other things that you think people shouldn’t say? Please share them and how you respond!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (74)
  • AMorrell
    1 month ago

    Oh I’ve had some interesting ones including many on the list. The best was recently I was told 95% of illnesses are cured with positive thoughts. I’m not sure how any study could even begin to confirm that lol

  • Monica Y. Sengupta moderator
    1 month ago

    ! Yes, I’ve heard that one too of sorts “you just complain too much about it!” Though in reality, I’m stating a fact like I can’t really do xyz activity because of a flare, etc.

    Thanks for sharing, AMorrell! ~Monica

  • MaryB
    7 months ago

    The topper I have heard from Crohn’s situations, is you don’t really have to have this if you don’t want it, or just go shopping, you will feel better. Right!!! Thank God for this site, we all really understand each other.

  • reader321
    1 year ago

    New member. My biggest pet peeve is “You need to try harder.”
    This is mostly from my family.
    I retired early due to RA, have to say the last year I worked was the most difficult. O needed to stay as long as possible for the good health insurance.

  • Erin Rush moderator
    1 year ago

    Welcome reader321! We’re glad to have you here. I am sorry you have heard various unhelpful comments from family members. As you can see from all of the comments on the article, you are not alone in this! Thank you for sharing your own “What not to Say” comment! Best, Erin, RheumatoidArthritis.net Team Member.

  • MES20874
    2 years ago

    I got this one: Maybe you can eventually go out on disability! …like that was a silver lining.

  • Erin Rush moderator
    2 years ago

    Well, that was a very unhelpful comment! Sorry you had to hear that! Best, Erin, RheumatoidArthritis.net Team Member.

  • stormlight
    2 years ago

    Hi there,

    I’m a new member here, diagnosed late 2015 but fully symptomatic since 2010. More about that later, though; I’m badly hacked off with the health service as is.

    My name is Cherry, I’m 39 at this writing, married for 21 years (22nd Anniversary in May), have RA and Asthma. Haven’t yet met a DMARD that’s been anything other than trouble. Hubby tries his best but has one or two crucial misunderstandings about RA; I’m trying to correct them but he’s a stereotypical man: thinks he always knows best. Oh, yes, I’m a Brit. Lived my whole life in Southern England.

    The worst comment I’ve had by far has come, would you believe it, from my own husband. Naturally I can’t work, but he expects me to do the household stuff that *really* hurts.

    Probably the worst one is washing his car. *His* car, not *our* car; I cannot drive and my name appears nowhere on any of the legal documents. Right now he isn’t even working, so you’d think he’d help out. I know it’s not exactly an articulated lorry (it’s a Kia hatchback) but it frequently feels like it is.

    When I tell him my joints are too sore/swollen and I can’t cope with the task, his inevitable response is something along the lines of “Tough s**t, you’re doing it anyway”, only very slightly more diplomatically worded. It’s better to keep the peace, with things the way they are at the moment; if the system wasn’t such a pig I would have left him. Needless to say, rows have been had, but I can only win them once I’ve crawled back indoors and the pain has erased my ability to control my temper. Hubby is a stubborn one. I have however warned him that if his attitude – he seems to give more of a damn about how clean his car is than about how much his wife is suffering – lands me in a wheelchair (the lowest third of my spine is crumbling), I will make the rest of his days utterly miserable and I will *never* forgive him. I do all I can to help him (he has an iffy heart valve and has to take Apixaban), like taking over the use of knives and scissors in the kitchen so he doesn’t cut himself; I also do his job-hunting, because he won’t do his own, and also I want him out from under my feet so I can rest.

    Trust me on this, though: in a few years (maybe less) it’ll be *me* saying “Tough s**t” when he wants the car cleaned. I’m already at the stage where I’m housebound without his help, so it won’t take all that long before I can’t get out and about, with or without him. He’s going to be in for a pretty big shock.

  • Richard Faust moderator
    2 years ago

    Sorry to hear about the diagnosis and that you are having these difficulties stormlight, but glad that you have reached out to a community that can provide information and support. Receiving a diagnosis can certainly bring many emotional issues, however, these often take a backseat to the physical. This article looks at the emotional aspects of a diagnosis, with some tips:

    https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems/.

    I’m sorry to hear that your husband is not being supportive. It can be difficult for friends and family members to grasp what an RA diagnosis and living with it means. I am the husband of someone with RA (Kelly Mack, a contributor here). You may want to look at this video we made about being married to someone with RA:

    https://rheumatoidarthritis.net/video/what-its-like-being-married-to-someone-with-ra/.

    In addition, here is another article from another contributor geared to those with love ones with RA:

    https://rheumatoidarthritis.net/living/loved-one/.

    I do not know if you can get your husband to look at these items, but even if not they may be helpful for you. You may also be able to find a local support group where you can talk with others in similar circumstances.

    Know that you can also always come here for additional support and information. Keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • rattbx
    2 years ago

    It doesn’t look like anything is wrong with her so why does she have a handicap placard?

    I’m sorry if I drive a sports car but you shouldn’t judge a persons health by the car they drive. What should I be driving a bucket or van?? My car isn’t sick it’s me! Geez!

  • Kelly Dabel moderator
    2 years ago

    Thanks for sharing rattbx. Glad you are driving the car you love and sorry for those that judge what they don’t understand. Thank you for being part of our community! Kelly, Rheumatoidarthritis.net Team Member

  • retiredbutton
    2 years ago

    “All my friends that have your disease are doing much better than you are. You have to change doctors, that one you go to is giving you too much medicine and you are not getting better.” said one of my best friends one day because I kept backing out of going places at the last second. There are many, many more comments that I have just let go. I am sure that sometime in my life I have said some horrible thing to an ill person. I was around many of my family members that were elderly when I was young. I remember some of the rude things I said to some of them. We have to forgive people, because maybe they don’t really mean to hurt you when they say things. They just don’t know!

  • Mariah Z. Leach moderator author
    2 years ago

    Hi jalandrdb ~

    I agree that often people who say these things do have good intentions – though that doesn’t necessarily make these things easier for us to hear! As you say, they just don’t know! I always try to use it as an opportunity to help spread awareness.

    ~Mariah~ (Site Moderator)

  • DParker
    2 years ago

    I’ve had. All those said to. Me. Oh well…it’s good to know I’m not alone.

  • Mariah Z. Leach moderator author
    2 years ago

    Hi DParker ~

    It certainly is frustrating! When I have the energy, I try to take these insensitive comments as an opportunity to educate others about the realities of life with RA! Hang in there and remember that we are here to support you.

    ~Mariah~ (Site Moderator)

  • Texasmomma
    2 years ago

    I just read the authors story. Well, Miss Mariah, I certainly have a lot of respect for you. Although I am certain I was experincing symptoms since childhood I was not diagnosed until 44. I can’t imagine going through my pregnancies with full blown RA. You are one tough cookie.

  • Mariah Z. Leach moderator author
    2 years ago

    Thanks, Texasmomma! The thing is, I always knew that I wanted to have a family – and I decided not to let RA take that away from me. I can’t say it was easy, but my little buggers are now 2 and 4 and I CAN say that it was worth it! Hope you are well!

    ~Mariah~ (Site Moderator)

  • Turtle13
    2 years ago

    You need a hobby. That comment makes me want to scream, esp when it takes all the energy I have just to get out of bed, some days. It’s right up there with: you take too much dangerous medicine. Well, if I had the help I needed, maybe I wouldn’t need so much medicine. I’ve had (so called) family members not let me catch a ride with them because they think I’m going to croak on them. Maybe that’s just the incentive we need to prove them wrong. Strangers have been kinder. I have this fantasy that all the folks who don’t come around or call suddenly learn I’ve won the lottery or invented something to help the world and these same ppl knock themselves out crawling over themselves to say: hey, we’re family, how have you been? And me, being me, would probably let them in. You know why? Because you can’t judge others harshly (or at all) for what they are not capable of. Wish I had learned this a lot sooner.

  • Mariah Z. Leach moderator author
    2 years ago

    Hi Turtle2,

    Thanks so much for sharing your experiences – even though it sounds like they have been difficult. So many of us have experiences like this, and it’s unfortunate when it comes from friends and family members who are meant to be supporting us. Hang in there and remember that this community understands what you are going through and we are here to support you!

    ~Mariah~ (Site Moderator)

  • smlove22
    3 years ago

    “What are you doing to lose weight?””You really don’t need to lose anymore weight!” If I’ve heard it once, I’ve heard it a million times! To the one who want my “secret”, I say nothing. To the ones who are critical, I explain I can’t help it, it’s my RA. What I want to say to everyone is “Get a disease that makes you fight against your body and you see what happens!” These same people will be just as mean when I put on tons of weight from meds and steroids. 🙁

  • Mariah Z. Leach moderator author
    3 years ago

    Hi Smlove22 ~

    When it comes to issues of weight you are right that it can certainly be frustrating in both directions. Hopefully as we continue to educate our friends and family about RA they will be a little bit more understanding. Hang in there!

    ~Mariah~

  • Stefanie Campos
    3 years ago

    “You’re always sick/tired, that’s because you don’t eat well/at time/enough…” People with RA tend to have leukopenia due to the medications we take. Really, it gets me everytime I heard this from my family. I was diagnosed at 22 and, though I don’t really look sick all the time, doesn’t mean I’m done with RA. Do you guys have any tips or things to improve stiffness/pain? I’m new, just 5 months from my dx.

  • Lauren Tucker moderator
    3 years ago

    Hi Stefanie Campos,

    Thanks so much for your comment, we are glad to have you part of our community. Sorry to hear about your recent diagnosis. We hear you when people just don’t get it. I thought this artcile “When People Just Don’t Get it” would be helpful. https://rheumatoidarthritis.net/living/people-just-dont-get/

    In addition you certianly are not alone when it comes to stiffness and pain, many community members find these articles helpful as well. “Managing Pain” https://rheumatoidarthritis.net/living/community-ideas-managing-pain/ and “Morning Stiffness” https://rheumatoidarthritis.net/living/stiffness-in-the-mornings/

    Please come back anytime!

    Best Wishes, Lauren (Community Manager RheumatoidArthritis.net)

  • Cloudy
    3 years ago

    You know, I never realised how many people have OSTEOarthritis until I was diagnosed with RA recently – now when I have to tell someone of my age group (55) of my condition I automatically prepare myself to look sympathetic while they tell me all about the arthritis they sometimes get in their little finger or a toe…….

  • Mariah Z. Leach moderator author
    3 years ago

    That is always frustrating, as those of us with RA know it isn’t the same. That’s why I like to be armed with facts about how the conditions differ!

    Hang in there!

    ~Mariah~ (Site Moderator)

  • xo3xxi
    3 years ago

    If u are feeling fragile go see the doctor was a really hurtful and unsympathetic reply to a statement made by myself in which I had said l was really struggling both physically and psychologically. If I bare my soul to you don’t shrug it off and put it on the shoulders of an overworked health professional.you have just been paid a massive compliment by daring to trust you enough to let u you how absolutely difficult l am finding life with ra

  • Turtle13
    2 years ago

    Well said

  • Mariah Z. Leach moderator author
    3 years ago

    Hi xo3xxi –
    That is a difficult one, because learning to live your life with a chronic illness is not exactly something a doctor can specifically think you how to do! And it can be so hard to open up about how you are really feeling as well. I hope that you were able to find someone to talk to who was more supportive!
    ~Mariah~

  • SofiaRA
    3 years ago

    I was diagnosed with RA three years ago July 1, 2012 at Mayo Clinic after suffering from symptoms for several before, which became increasingly worse. My symptoms started after having suffered I think my RA was through 5 bowel resections in the mid-1990s due to bowel obstructions from endometriosis, then scar tissue. I have had peritonitis twice and almost did not make it. I think that bad infection and the multiple antibiotics triggered my RA. I starting my 4th biologic, and have tried DMARDs, my RA has never been under control.

    I think I have had someone say all of the eight things that you should not say to someone with RA, said to me at one time or another. One friend has told me repeatedly that she has a cousin with RA that only has to take an occasional aspirin for her RA, and of course she exercises and bikes all the time (I find that hard to believe). I also quit this friend anything about the medications I have tried or am currently taking because when I have had to take prednisone she tells me repeatedly, “that’s not good, you need to get off of it,” and she literally gets angry about it. I have had my cousin an RN say the same thing. I have flare ups of Uveitis or Iritis that can cause permanent blindness with my RA so I have to take prednisone or lose my eyesight when I have those bad flares. Winter of 2014 I lost my eyesight for about 6 weeks due to an acute Iritis flare up, and was on high doses of prednisone. I had no idea RA could cause such a thing until it came on during a CAT Scan for my abdomen when they were having me drink contrast and gave me an IV of contrast. By that evening I could not see. My Ophthalmologist told me it was my RA.
    I had my family doctor tell me to try a gluten free diet She also admitted to me she knows nothing about the medications for RA, this happened when she prescribed an anti-biotic and I asked her if I needed to stop my biologic medication.
    Another stupid thing that my father has said to me when I was diagnosed with RA was, “It sucks to get old doesn’t it.” Needless to say I told him RA has nothing to do with getting older.

  • Mariah Z. Leach moderator author
    3 years ago

    Hi Sofia~ Sounds like you have been through some frustrating times with others not having a lot of real knowledge about what RA really is or means. When I have the energy, I always try to use those situations to educate others – but that is sometimes easier said than done! Hang in there and please remember that we understand what it is like!
    ~Mariah~ (Site Moderator)

  • Leah1322
    3 years ago

    The. Biggest thing I hear is people telling me what I should or should not be able to do. If you can do this… I dont see why you cant do this… or telling me that because I cant do one thing i shouldnt even try to do others. Also no one seems to understand why one day I can seem “fine” and the next I “claim” to be too weak to lift a glass of water or have to use a wheel chair. I try to explain, but if they dont get it I chalk it up to ignorance and let it go.

  • Mariah Z. Leach moderator author
    3 years ago

    Hi 1oc00wp ~ I do understand what you mean. I think it can be so difficult for others to understand that pain isn’t always visible.
    ~Mariah~

  • Maryjane
    4 years ago

    I just joined the site and read your post below. I too am a writer (short story, satirical ‘Half Truths” as I like to call them). I love #7…. Now is the best time to have RA. Geeze…. I’m not too busy today, maybe I can come down with a lifetime of dealing with RA this afternoon. I also have MS…at least I haven’t been robbed of my sense of humor.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Maryjane~
    Welcome to the site! Glad you have found our community! I agree that keeping your sense of humor is super important! Hang in there!
    ~Mariah~

  • Joan M Geisbrecht
    4 years ago

    If we used a different term for this disease, would it be helpful? Maybe Auto-immune rheumatoid disease? I was diagnosed at 62 just as I retired and was looking forward to doing so many things. It hit me like a ton of bricks. By the time I was referred to a rheumatologist, my RA factor was off the wall. People say “get out more, volunteer”. Some days it’s an effort to get out of bed. My family of husband, 3 kids, 9 grands are my rock. this group is wonderful, someone who understands what it’s like when you can’t wring out your washcloth. The thing I find hardest is asking for help, I was a nurse and took care of everyone else……

  • Elizabeth Riggs
    3 years ago

    Joan, I, too, was a nurse. I’m still working on trying to take care of my husband (who has coronary artery disease and moderate COPD), who is trying to take care of me! He cooks, I can’t. He drives, I can’t. But I put his eyedrops in at night (glaucoma), he can’t. And I take care of all the dratted PILLZ we have to take. RA has taken so much from me – and from my family (who are 100% supportive). And I’m so tired of people telling me I “don’t need” something (cane, walker, mobility scooter, mobility service dog) that I could just scream. And a “friend” told me that “essential oils cured my RA. So I don’t need to take all those pills anymore!” Then she started to try to twist my arm to buy essential oils from her! She’s no longer a friend – just an acquaintence. Who has gall like that!

  • Elizabeth Riggs
    4 years ago

    Joan, you and I have much in common. I, too, used to be a nurse, and had to stop working after 50 years (in various positions: clinical, administrative, Public Health, education) because of the pain and fatigue.

    Now, my husband has had 3 heart attacks and has 7 stents in his coronary arteries. I NEED to be taking care of him, not he taking care of me. I was a nurse, doggone it!

    I fought against the pain and fatigue for 29 years before I was finally diagnosed with RA. (Fibromyalgia was diagnosed 10 years sooner.) Now, 5 drugs and 2 surgeries later, I’m in just as much pain, much more stiffness, and my liver and kidney tests are moving into the “I’m concerned about these test results” stage.
    This disease has taken so much away from me.

    {I probably need to write an article about all the “take-aways” those of us with Rheumatoid Disease experience.}

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Joan! This is an interesting idea that many others have suggested and many strongly believe in. I do think the “arthritis” part of the name is a bit confusing for some, but I also think we’ve come a long way in promoting awareness about what it really means. So glad to hear that you have a wonderful supportive family! Hang in there!

  • Meg Koelzer
    4 years ago

    Mariah, do you have any tips for a boyfriend or family member who is consistently telling me to “try a different diet and exercise?” It seems they have it stuck in their head and nothing I say can convince them that those may help but are NOT a “cure all.”

  • Mariah Z. Leach moderator author
    4 years ago

    Anne that’s a great suggestion!! Thanks for sharing!

  • Grannie55
    4 years ago

    For me, I invited my husband to come to my appointment with me and ask his questions to my rheumatologist. It was quite a learning experience for him and for me. The doctor explained things better then they had ever been explained to me before.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Meg ~ That is certainly a frustrating problem and I’m so sorry you have to deal with it on top of everything else. I wish I had a magic solution! While some people do seem to experience benefits from changing their diets, there is NO scientific evidence that any particular diet will help with RA. And while exercise is certainly important, no amount of exercising is going to cure RA. If they won’t listen to these facts coming from you perhaps they would be willing to read some articles – like this one – about it? Maybe hearing it from someone else – an “authority figure” would help them process the reality you are dealing with. Here’s another basic article that might help: http://rheumatoidarthritis.net/what-is-ra/
    Best of luck and hang in there!
    ~Mariah~

  • judy york
    4 years ago

    This is my experience with RA: Auto accident, chronic pain, multiple doctors, pharmaceutical medications, diagnosed genetic RA, and 7 years with no quality of life. I found Plexus in July 2013 from a personal friend of 10 years. Plexus is a supplement, and I chose this avenue because of the past, with all types of pharmaceutical medications, addition and side effects, scared me to death. I relied on personal prayer and my relationship with God, to go in this direction, and put these products to the test. I became an Ambassador for the product, and saw positive results in nine days. I stopped all pharmaceutical medications on this ninth day, and I have never looked back. I am currently 18 months now, 100% pain free, with all inflammation under control. I am a avid kayak-er and I am on the water every week. I finished a 44 mile paddle, the last week of October, and walked off the river, 100% pain free. I want to share my experience to help others gain the knowledge, that Plexus Products really do work and can offer a renewing of your quality of life. My future is to take a kayaking trip to Alaska, in 2016. If you would like to learn more about my journey to get to 100% pain free status, please message me @ Facebook: Judy York, Lone Grove, Oklahoma

  • Elizabeth Riggs
    3 years ago

    This is not the place to post ads for your product.

  • Debra Slaughter
    4 years ago

    I would like to add a comment to your “what not to say to an RA patient” I’ve been told to get over it and move on. I’m sure most RA or anyone with autoimmune diseases would agree, we wished we could get over it. Because the disease looks good on the outside, doesn’t mean that there is absence from a horrific storm inside. I just wish people would educate themselves about the disease before making such an ignorant comment. Then to go on holding it over your head and saying that I have issues because I’m sensitive. Anyway I got over it, and have moved on concentrating on dealing with my disease. I am focused on being positive with only the people who care. Sad part is most of us with autoimmune disorders suffer with more than just one. I also have in addition to RA, fibromyalgia, osteoarthritis, and psoriasis. Life will most likely be about what surgery is needed next to keep from living in a wheelchair. I love the comment I have arthritis too!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Debra ~ That is another frustrating one! It isn’t fun when people act like the disease is only in your head. It may be “invisible” but it is real! Hang in there!

  • Karen O'Bannon
    4 years ago

    Reading all of these comments sound as if someone has listened to all the things I’ve been told, heard or thought myself. I agree the comments coming from family members, while they mean well, can make the most hurtful comments. One day while I was taking a nap due to terrible pain, including a headache, opened the curtains wide, turned on the TV & started talking like we were in mid-conversation! In a ‘whisper voice’ said, “Mom, I really have a headache & hurt all over. Would you please close the curtains & turn down the TV?” She snapped back at me, and said, “Well…I can’t SEE your pain!” That comment felt like a knife in my heart & I know she didn’t mean to be so cruel, however to this day, no other comment related to my RA has hurt me so much, and I will never tell her about it. Truly, we can’t ‘see pain’, unless the person is using a walker (I have one) or have had surgery (I’m scheduled in 2 weeks for my 6th surgery on my knees. I’ve had 2 knee replacements in the same knee; 3 yrs after the first one was done, it ‘came apart’ in my knee at the tibial plateau & femoral cap – had to have a total Revision. That was 2 yrs ago. Now, I’m having the other knee replaced. Let’s pray that it ‘stays together!’ I used to be very active at work, as Founder & Director of a family resource center in our rural community. Now, I’m on disability leave to rest prior to surgery. And depression: It has hit me & I realize; I’m mourning the loss of ‘the old Karen’. I’m mourning the loss of ME…of what I used to be able to do, my stamina, my involvement in many community services, etc. Fortunately, my children are 27 & 22 yrs old, so I don’t have to worry about caring for little ones. I just don’t know how the younger mothers can do it. Thank you for allowing me to share my story. As you can see, I could write thousands of words more! I have been journaling, tho not as often as I should. If you would like to increase your list to “9 Things Not to Say…”, you have my permission to add, “Well, I can’t SEE your pain!” Several of the comments on your list are similar, however those are my mother’s exact words. I will never forget them. Sincerely, Karen

  • MaryMF
    3 years ago

    I got a similar line from my father. ” sometimes I think you enjoy being in pain” I think I bought a Pepsi, I know it’s bad, but with this, anything that can make your day a little happier is important.

  • Elizabeth Riggs
    3 years ago

    My precious dear husband (DH) told me, “Although I can’t see your pain, I know it is with you all the time at different levels. If it’s a really bad day, please let me know!” And I do, and he takes it from there, preparing the meals I can’t manage, bringing me things, and making special dishes for me.

  • Leslie Rott moderator
    4 years ago

    Karen, glad you are finding the site helpful. I hope it helps you feel less alone, and might help you in how to handle comments from others. It’s a difficult skill to learn.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Karen~ Thank you so much for taking the time to share your story. It sounds like you have really been through a lot and I’m glad you have found our community where there will be lots of others who understand what you have been/are going through! Best of luck on your upcoming surgery!

  • Kellie
    4 years ago

    Thank you Jo Anne! I found a great doctor, then I moved. My new one is nice also.

    Melissa, I am so saddened by your sons struggles. I cant imagine having this disease at such a young age. The stress on you both has to be overwhelming. I hope your son is feeling better. Will be praying for you.

  • JoAnn Clarke
    4 years ago

    Thanks Mariah- great article! Over the past 20 yrs since diagnosed- I have heard them all! People simply do not understand Autoimmune disease-period! Even worse- there seems to be somewhat of an attitude that you have done this to yourself (??)! My easy response to most questions from friends & family, ” I inherited this disease-(although once diagnosed with an autoimmune disease, one can be predisposed to get another). The response appears to startle them; thus alleviating any suggestions of “diet, exercise, and hocus pocus suggestions”. I have adjusted my diet, I do exercise, I do “look well”-but some days I feel like I am 110 yrs old- and yes, I hurt- for no apparent reason. Life goes on; and I feel especially blessed to have good days- and look forward to more of them in the future:-)

  • Mariah Z. Leach moderator author
    4 years ago

    Hi JoAnn – I also hate when, whether out loud or just insinuated, people seem to think we’ve done this to ourselves. Why would we ever want to do that?!?! And I fully understand what you mean – some days are good days and other days are bad days, but just because we “look fine” doesn’t mean we always are or that we are not in pain. Hang in there!

  • Teresa
    4 years ago

    Lately, I hear #6 & 8 the most, even from my other doctors! Sometimes I feel that my PCP and cardiologist don’t truly understand the pain and fatigue from RA. I will explain that some days I can walk okay, and some days I walk like a robot, but it doesn’t seem to sink in. As for too many meds, I have a heart condition that requires 3 medications, plus another chronic illness that requires 3 medications. When the RX’s are written by doctors who have run tests and verified these are legitimate illnesses, and then they say “you take an awful lot of medicine” I want to remind them, THEY wrote the prescriptions! It gets very frustrating to have to try to educate your doctors as well.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Teresa~ How extremely frustrating to hear that type of thing from a DOCTOR. Especially the ones who wrote the prescriptions themselves!!

  • Kellie
    4 years ago

    I have heard #2 and 4 the most. My first Rheumatologist was kinda nutty, she actually put me on a gluten free diet. While it helped with my IBS, it didn’t do anything for my RA. Because my blood results had very low Rheumatoid factor, she didn’t even give me an RA diagnosis. After several other nutball things, and being put on steroids for over three years, I got a new Rheumatologist that said I had RA all along. If a Rheumatologist is crazy enough to think gluten is the problem, is it so surprising other people would think so?

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Kellie ~ I do know some people who have had great responses from following a gluten-free diet, so it was probably worth a try. I tried it for 6 months myself without any result either, however. I hope your new rheumatologist is more supportive of your needs! Hang in there!

  • JoAnn Clarke
    4 years ago

    I am stunned about your (& Teresa’s) experience with your physicians!! Holy Cow! How insensitive & unprofessional!

    I hope you can find a caring, understanding medical professional that can see you as an individual who needs respectful care.

    Best of luck!

  • Kelly Mack moderator
    5 years ago

    Love these and totally agree! Thanks for your post Mariah!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi JoAnn~ Thanks so much for your supportive comments. It is so nice when those of us who understand can lean in and support each other! ~;o) Hope you are doing well!

  • Nicole K
    5 years ago

    Great article, Mariah! These are all so true.. if I could only count the number of times I’ve heard #2 and #4 specifically. I try to remind myself that the general public doesn’t know any better – they don’t understand the severity of RA and automatically lump it in with other types of Arthritis. Still doesn’t make it any easier to hear some of these things (especially #6 and people telling me I should try more “natural treatments”). I guess that just gives more reason to raise awareness and advocate, right? 🙂

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Nicole~ It can get so frustrating to hear these over and over again. I, too, do the best I can to remember that it is an opportunity to educate others! Hope you are doing well!

  • Melissa Varner
    5 years ago

    One that I would add would be, “At least it’s not cancer.” Perhaps if everyone could attend a Juvenile Arthritis camp and talk to the parents that have lost a child, or see the young adults in wheelchairs deformed and permanently disabled…..perhaps then, one would not let that slip quite so easily from their mouth. Not many deaths are attributed to JIA or the other childhood diseases of it’s class. Instead, they get attributed to the complications resulting from the disease.

    Everything my 14 year old son has gone through this past year is the result of a complication of his JIA. The night before he was diagnosed with the ICP of 42, ( 22 is life threatening) he asked me if he was going to die. I’ve had several nurses tell me his brain was probably beginning to shut down. He sensed something that night. If we had lost him, his death would have been recorded as a result of a high ICP not JIA….the complication…..not the disease.

    My son has suffered this past year……and I don’t use that word “suffer” lightly. He has truly suffered. In that suffering I have searched for programs, wishes, anything to help keep his spirits up. There”s so much out there for families and kids with cancer. For my son’s condition resulting from the complications of JIA…..not so much. For kids with other rare diseases……not so much. So no, forgive us, but it’s not a comfort that our kids don’t have cancer. I’m not saying our kids suffer any more…..but they certainly don’t suffer any less. Kids with diseases other than cancer suffer too. My heart breaks for all kids facing any disease…..they are true inspirations!

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Melissa – I have heard that one as well. It isn’t an easy one because on the one hand, yes, at least it is not cancer. But on the other hand even though it is a different kind of suffering it is still suffering and still as valid. This is a topic that I tend to think about ever October – when the world goes pink for breast cancer awareness and World Arthritis Day gets lost in the sea of pink. And while of course cancer is a serious disease and we all support those who are facing it, it would be nice if people facing other diseases could likewise get some support. I am glad, at least, that your son has you! You seem like an amazing source of support!

  • Jamie Young
    5 years ago

    I have heard people say: “You need to get out of the house more often.” The truth is that if I do not feel like going out, it is either I do not feel well, or I am tired from my treatments. If I didn’t have an autoimmune disease, I would have more freedom to go on outings and have fun. Also, I have heard people say: “You do go to a lot of doctors and why do you need treatments?” Not many people who I know that I have to have treatments periodically to keep my disease from getting any worse and the infusions help me function and have a normal life as possible. I find it hurtful when someone asks if the treatments ever get old. I tell them that the infusions themselves are not fun and I must have them to look and feel better.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Jamie – I have heard both of those myself. It is frustrating that people don’t seem to understand that sometimes just getting out of the house is easier said than done. I’m glad that you try to educate the people who are not very sensitive about your need for treatment. Hang in there!

  • Wren moderator
    5 years ago

    Excellent post, Mariah. My elderly mom said “You just need to exercise more” just this morning. Sigh.

    Now, if we could just get people who DON’T have RA to read it!

  • nadaleen brady
    4 years ago

    I agree my sister said why don’t you lift weights it’s good for your bones
    I can’t even hold a coffee cup with one hand I have to use two because I drop things. I just looked at her like she was mad. People and family especially don’t get ra. It is really a sad thing.

  • Mariah Z. Leach moderator author
    5 years ago

    Exercise is awesome, but not always an easily attainable goal – is it? Very frustrating. And you are right! Now we just have to figure out how to get everyone we know and might ever meet to read this list! ~;o)

  • Andrew Lumpe, PhD moderator
    5 years ago

    Great post Mariah! Thanks for bringing these insensitivities to the forefront. I’ve heard them all and it’s harder when they come from someone you love like a family member.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Sherry – I think one of the most frustrating aspects of these hurtful statements is that the people saying these things ordinarily mean really well. You are right that we just have to do our best to educate people who don’t know any better. Glad you have found some support from us here!

  • Mariah Z. Leach moderator author
    5 years ago

    Thanks, Andrew. I think there are definately more – and variations on these – but these are the ones that seem to come up most often! And, yes, particularly frustrating when they come from someone you love.

  • Sherry Cannon
    5 years ago

    It really cuts deep when it is from a loved one or family member. Thankfully most people who really understand and they try to understand. We have to educate the rest of the world be cause most people don’t but they feel like they must say something and they think all forms are the same, you know the one always say “oh yes, Arthritis, I have that in my toe or this finger” and they continue telling how much older they are that you and have had it as if that made it much worse and since you are young and don’t really “show”. The problem is no matter what you say they are not going to understand.They have no idea nor do they want to be educated about it unless it’s someone that truly care. The best thing to do is smile and keep putting one foot in front of the other. That’s why support systems like this one helps us to keep moving forward and know we are not alone but have a support system of things we do understand together and things that really help not just old wives tales.

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