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How Am I Doing? The Dreaded Question …

It’s the same old question born out of social obligation: “How are you doing today?” Truthfully, since being diagnosed with RA, I don’t know how to answer this question. While I recognize that, in most instances, asking this question comes from a place of good intentions, I find that I have to filter my response because it is profoundly difficult to explain the complexities of RA to someone who does not have the disease. Accordingly, I want to spend some time today dissecting and discussing this question and what are, if there are any, the socially appropriate responses to that question.

Talking honestly about RA

Mixed feelings of guilt and honesty

Although it is something I am currently working on, I always feel moderately guilty answering the question of “how am I doing?” honestly. It feels uncomfortable to consistently answer that I feel awful because I never want to come across as if I’m complaining. Because if I were honest each and every time, it would sound like I’m constantly complaining. It would sound like I am constantly in pain, that I am fatigued and exhausted, feeling like I’m being dragged along the ground each day, that I have mini fires erupting in the tiniest joints of my fingers and toes. Further compounding this problem is the fact that it is incredibly difficult to communicate to someone without RA that I am not really complaining; I’m simply expressing how my body genuinely feels, that the truth my body embodies is that I’m not doing well. I don’t feel well; hardly anyone with RA does. That my joints hurt, that I am exhausted beyond belief, that I feel weak and feel like I have the flu, all the time.

My body, my truth: the answer lies within

What I have found throughout my personal experience with this disease is that how I am doing is really no one’s business but my own. That I embody a certain catch-22 each time those words leave someone’s mouth. If I explain how poorly I feel, I become a complainer, someone who should “toughen up”; if I tell a white lie and say I’m doing fine, even as wrist braces adorn my hands and the pain in my hip causes me to limp, I become disingenuous. What are those of us with RA to do? My solution thus far rests in being completely honest and transparent: my joints do, in fact, hurt. This body that I occupy is a body in pain. And I will no longer be silent about it, for to fully accept that I have this disease is to write and more importantly speak this disease into existence. Part of that acceptance rests in telling the truth of my body.

So, how am I doing? I don’t know. I embody a space of pain and no pain, guilt and freedom, fear and acceptance. All I know is that I don’t feel well but that I am actively working on getting better. And maybe in that march toward improvement lies the answer to this dreaded question.

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

  • miaj
    2 months ago

    Thanks so much for sharing, David. I know I totally relate to your post, especially that ongoing exhausted flu-like feeling and never knowing how to answer the ‘how are you’ question. I think that generally, people ask that question as more of a social nicety too and aren’t all that interested in the answer. Any time someone actually answers it pulls them up short. 🙂 For people who are really asking, though, you’ve totally nailed the feeling — is it better to just handwave and say ‘fine’ or be honest? I’m not sure I have the answer either, but like you – I find it gets exhausting not being able to talk about what life’s really like with RA, when at times it’s all consuming. And, yes, keep marching on. xx

  • Monica Y. Sengupta moderator
    2 months ago

    Hey @miaj! Thanks for commenting! You are so right. I often find that internalizing my feelings makes me even more tired but, like you said it’s difficult to find anyone who listens.

    Please know you can always come here if you want to talk or vent. We will listen! ~Monica

  • David Advent moderator author
    2 months ago

    Hi @miaj, thank you for your response! I’m glad my article resonated with you and your experience with RA. It’s hard to know what to do sometimes when someone asks you even the most basic question of “how are you doing?”. But I figure those of us with RA will continue to live our most authentic lives as best we can! Thank you for commenting, and I wish you the best,

    David (RheumatoidArthritis.net Team Member)

  • RemedyReady
    2 months ago

    My sister and I was diagnosed a few months apart in 2013. So we keep each other informed on how we are feeling. I think it’s important to find someone who has the same diagnosis that you have to share your genuine feelings with. When speaking with others I usually say “hi” and thats all. But I’m one of those whose pain shows on my face. So I really don’t have to tell anyone that I’m hurting you can tell by my expressions.

  • David Advent moderator author
    2 months ago

    I’m right there with you, @remedyready, my pain also shows on my face. You’re right, though, it is so important to find someone who also has RA so that you can communicate your experiences together. Thank you for your comment, and I wish you the best,

    David (RheumatoidArthritis.net Team Member)

  • Amy Borel
    2 months ago

    Hardly anyone with RA feels well.

    This is so true! And makes it hard to respond when despite being honest about this, people say things like “I’m glad you’re feeling better.”

    Say what?

  • Monica Y. Sengupta moderator
    2 months ago

    Actually, though! I relate to your comment so much, Amy!

    In my friend’s defense, though, their perception of illness is sick or healthy. There is really no way for them to know the gradient that is an autoimmune condition. I do appreciate the people who try but sometimes it’s exhausting. Best, Monica

  • tulugaq
    2 months ago

    I find these comments mostly reflecting my thoughts/feelings about a response to “How are you?” Basically, it comes down to this: if it’s a casual question, or from someone I don’t know well, I usually smile and say “fine,” or “OK.” If it’s someone I know, someone who really cares how I feel, I’ll probably tell them. Most often, I’ll smile and say something like “you know.”

  • sharoncookie57
    2 months ago

    I face this so many times. I also feel that people don’t want to hear it really. They seem to not know how to answer that. They clam up. I really don’t why they ask you if they don’t want to know how you really feel. It sure doesn’t help as you do need to talk about it as you are in pain always.

  • Alesandra Bevilacqua moderator
    2 months ago

    @sharoncookie57, sounds like a predicament! It’s so difficult to want to accurately describe how you’re doing but have to keep others’ responses in mind too. You can always talk about it here with us don’t forget! – Alesandra (RheumatoidArthritis.net Team)

  • northlake
    2 months ago

    Thank you for your article. I have been thinking about it all night. I read all the other comments. I have been a member for quite awhile and have noticed the trend of positive comments that bury our real feelings behind for no one to see.
    I’m thinking that the most important thing all of us can do is educate the masses and tell it like it is. We need commercials, articles, races and collections for THE RA CURE. I don’t want any of my four children and twelve grandchildren to live like I have to. It is hell on earth. It kills me to see what my husband has to become for me.
    I am positive! I’m positive that I don’t want this anymore and want all of us to tell it like it is so we can live as members of this world. With RA that’s pretty much the only thing we are able to do . I will be positive to tell it like it is because I’m mad as hell.

    TBell

  • David Advent moderator author
    2 months ago

    @northlake, I’m sincerely grateful that you enjoyed my article, I really appreciate your kind words. I’m right there with you in thinking that the only way to make sense of having RA is to tell it like it is! Wishing you all the best, David (RheumatoidArthritis.net Team Member)

  • Kelly Dabel moderator
    2 months ago

    Thanks for sharing your perspective northlake! Your honesty and realness is inspiring. We appreciate you being here and sharing. Wishing you some relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • NancyR
    2 months ago

    I’m hesitant to mention this at all; however, it might help someone else. Over a year ago my doctor provided me with some information regarding a study about the effect of gut microbes on RA. This study indicated that gut microbes have a definite effect on the inflammation associated with RA. I immediately went on a totally grain-free diet. This is no grains of any kind in any form. No flour in anything, no cereals, no bread, pasta, NO grains. I started reading labels and was shocked to learn how many foods contain flour. Who knew that canned tomato soup has wheat flour? I eat my proteins, usually skinless chicken, eggs (I yolk, 2 egg whites) broiled fish (no breading), small amounts of pork and lots of vegetables and fruits. In one year I lost from 197 lbs. to 158 lbs. and that’s without any exercise at all. But here’s the best part. My inflammation rate has been normal for over a year. I used to wake up with my hands frozen in a claw-like position. Now I wake up with total mobility every morning. I still have pneumonia a lot, the dreaded fatigue and terrible Raynald’s, but my hands and feet don’t hurt at all. And after all, it’s the inflammation that causes the swelling that affects the synovium causing damage to the joints and bones. I’m a believer and I’m proof that going grain-free can help. I’m not going against anything a doctor may have told you, but changing my diet was the best thing I’ve done for myself in the 10 years I’ve been treated for RA.

  • sharoncookie57
    2 months ago

    I have done this and it makes me go the bathroom to much. Wonder if you have this problem?

  • NancyR
    2 months ago

    Not very much. Because I also have a unrelated to RA heart problem (I had a valve replacement 2 years ago) I take Lasix every day. That requires me to drink lots of water all day long and I’m sure that helps in the bathroom department. I always eat a large apple a day and sometimes a banana. I don’t eat anything fried and I limit the amount of sugar I eat. That isn’t too difficult when you’re not eating anything that contains flour! The first month was sort of hit and miss, but over time I figured out what works best for me. Just cutting out all bread and pasta would make a big difference.

  • NancyR
    2 months ago

    What stopped me from saying anything other than that I was “ok”, were people who as soon as I mentioned Rheumatoid Arthritis started telling me about their arthritis (not RA) and how the rain makes their hands hurt, etc, etc.
    I wish the RA had a different name – nothing with arthritis in it since it’s not that at all.

  • Alesandra Bevilacqua moderator
    2 months ago

    Ugh, @nancyr, that’s incredibly frustrating! Have you considered referring to it as “rheumatoid disease”? Some other members do, and it may help with getting your condition across to those who aren’t aware! – Alesandra (RheumatoidArthritis.net Team)

  • NancyR
    2 months ago

    That’s a wonderful suggestion! I’ll definitely start doing that. I’m glad I signed up for this website. I’ve already learned something new.
    Thanks!!

  • REDBONE
    2 months ago

    I feel this craziness going on in my body most days, eventhough I take my medicine everyday! I’ve started answering people’s questions like this.When asked how I’m doing I say, “I’m doing!” It would take me a while to tell someone how I

  • Alesandra Bevilacqua moderator
    2 months ago

    I hear you, @redbone! Thanks for weighing in on the conversation. – Alesandra (RheumatoidArthritis.net Team)

  • Ceecee54
    2 months ago

    The easiest thing to tell most people is “I’m doing okay,” and usually that’s fairly accurate. If I weren’t doing okay, I’d be home taking a sick day instead of teaching. When my husband or my closest friends at school ask me, though, I know they truly care and want an honest answer, so I can tell them what is really going on in my body that day. A couple of weeks into the semester, my students also learn quickly that I need my screen pulled down, my chair at the desk, and they are very good about asking what I need help with. Nursing students in my classes are also really good about helping me up out of my chair if necessary at the end of the class periods. I’m fortunate to work in a very supportive educational environment.

  • starscream
    2 months ago

    When someone says “How are you?” its usually a greeting and the answer is either “OK, how are you?” or “Hungry, wanna get lunch?” or “In a rush, see you later.” At any given time some 20% -30% of people have something serious they could tell you (their father died, they are depressed, they missed their last mortgage payment..). They don’t tell you. And we don’y tell them about the RA.

    Yes occasionally someone is really asking how you are. It might be a boss that knows you have good and bad days and needs to know if you are up for making a presentation or taking the stairs and then you reply honestly that you need the elevator or that maybe this presentation could be made by someone else. Or maybe you could reveal that you need to sit down after standing three hours.

    Sometimes its a friend who notices something is wrong and asks how you are in concern. In that case, maybe tell them everything. But only if its the kind of friend that is close enough to be able to respond. Otherwise, its not lying to say you’re knees are giving you trouble or you feel unwell and leave it at that. It’s an autoimmune disorder so I don’t consider it to be a lie to say you have an allergy if they notice a rash.

    I don’t see why anyone needs to know about the RA except a very few people. I wouldn’t tell someone unless I was ready to hear from that person that they had cancer or had lost two pregnancies or were worried that their teen son might try to commit suicide again. You see, its very serious, and every body is suffering something themselves. We don’t have to share our suffering unless we are prepared to hear their problems and help them.

  • MaxDrave
    2 months ago

    My answer to most such questions, is, with a smile … “Oh I am professionally ill, I’m used to it” ….

    As I am in a power wheel chair because of my RA which is all over, in my digestive system and in my eyes …. It’s easy ….. People laugh and feel OK…. Rather than feel they have to show deep concern which they don’t feel per se. Patronise me by accident.

    It’s not purposeful, people are simply not socially trained to deal with illnesses and disabilities in others.

    After a decade of this ‘professional illness’ much has occurred with myself ….. Apart from being fit & healthy Sunday, messed up 12 hours later on Monday when the RA train hit me in the night …. full on …. and apart from being in a wheelchair from month three back in 2009.

    * In 2010 I had a heart attack and a stent subsequently fitted.

    * In 2010 again, I had a fall and broke my back and severely damaged my neck… Osteoporosis from too many steroids apparently.

    * 2011 Chronic pain syndrome, too many opioids … Cannot take NSAIDs, serious hypertension so have to take Opioids at highest doses.

    * 2012 Diabetes 2, Thanks Prednisolone.

    * 2013 Hypothyroidism

    This list continues with various hospitalisations, new illnesses, more drugs, ever more complex mobility issues, moving home to cope with my requirements and so forth.

    2018 – June – Sepsis … 2 weeks in ICU, then 5 months of home treatment with heavy duty intravenous anti biotic (PIC line fitted) 4 months of oral heavy duty anti biotic

    2019 – Test scans for bowel cancer – Clear, which is nice.

    Believe me the detailed list looks like a mini novel …. BUT

    * I am professionally ill, it takes much time to be this ill … But I do not care; I simply live the best life I can.
    * I never make excuses … I can do it or I can’t
    * I do not get fed up or complain because I can no longer race cars, motorcycles, walk our dog and do all sorts of other things including have a sex life with my wonderful wife .. because that cures nothing. Just makes life harder.
    * I do not EVER whine about pain, even when I cannot pick up a cup

    This list I could also continue in respect of what I refuse to complain/moan/whine about, but unfortunately see too often in others with 1/20th, 1/10th or 1/5th of my issues.

    Personally I expect nothing of anyone, I am extremely fortunate my wife is a highly intelligent, decent, educated person who is a Dr of Psychology … so many others lose their partners.

    When someone asks how are you, unless they are very close to you, they are being pleasant, they are fulfilling their social expectations.

    So you just say… I’m good thanks … Because they have no need to know any more and just because you’re ill, do not over share.

    It annoys the living hell out of me when people do over share…. Even though I am ill, so actually do know it can be difficult but I have no need to hear that.

    No matter how much anything hurts – You are alive, you are not dying fast, so really, get the hell on with it.

  • Dee27
    2 months ago

    Your posting in reply to “the dreaded question” is truly inspirational, it covers a multitude of possible answers. Many thanks.

  • David Advent moderator author
    2 months ago

    My apologies, my response got redirected to the wrong thread! Please ignore my other response! -David (RheumatoidArthritis.net Team Member)

  • starscream
    2 months ago

    Thank you for this.

  • Piplover
    2 months ago

    It depends on the person I’m speaking with. If it’s a stranger, I know they just ask the question because it’s in the “polite people handbook” when being introduced. But when I’m with my friends, I tell them the truth. When it’s a bad body tell, I tell them that. When it’s a good day, I’ll tell them that I have more energy and feel better and can do something fun with them. Strangers, I don’t care if I lie to them, it’s none of their business if my body aches or I feel like poo that day. But friends? They know I’m doing the best I can, and I won’t lie.

  • sondecicada
    2 months ago

    I find myself short of words to express how much I value your writing. Your words reflect the thoughts and feeling that I carry inside. They are somewhat like secrets that I don’t share with others. Then . . . I read your post and I think Oh yes! He knows. He understands. How am I doing? What I say depends on who is asking the question. I refuse to hide my condition and my suffering. If you are my family, friend or someone that I perceive really wants the transparent truth. I say “I am not well”. If the person wants to know more . . . I will share it. I have a long history of hiding my ailments and pains and difficulties and pretending that everything is just fine. RA has changed me. I am different now. I am more honest with myself and others. I am more transparent about what my day to day reality is like. If it is someone like the friendly cashier at the grocery store I will usually say something like “I’ve had better days”. The new me does not care if people want to know the truth. The new me must be a warrior and a fighter and for me . . . that means that I don’t hide my reality from the outside world.

  • Mary Sophia Hawks moderator
    2 months ago

    I use the word cope. Today, I’m coping okay. Yesterday, I was not coping well. Sunday, I coped very well. Because I simply cannot say, I’m fine. That is a lie. Acknowledging pain makes others uncomfortable. But somedays, that’s all we can own up to.

  • Alesandra Bevilacqua moderator
    2 months ago

    Wow, great way to handle it, Mary Sophia! – Alesandra (RheumatoidArthritis.net Team)

  • patty86
    2 months ago

    Dear David, I just wanted to say I really appreciate you sharing these feelings in such an eloquent and transparent way. As a fellow RA warrior, I often struggle with the same challenge. How do I answer back to my family and friends?. It’s a simple question that’s so charged with mixed feelings and deep inside I never know what to say. If my answer is overly enthusiastic and positive they get the feeling my disease is gone, if I really share how miserable I feel, I get a pity consolation.
    I find a midpoint sometimes by saying: I’m ok. How are you? And shifting the energy around.
    I learned through time that replying “ok” is enough as an answer by moments.
    Happy to read that you’re actively working on feeling better. Sending good vibes! 🙂

  • David Advent moderator author
    2 months ago

    @patty86, thank you for your kind words about my article! I really appreciate them. I wish you the best as you continue along your journey with RA! -David (RheumatoidArthritis.net Team Member)

  • Louise1024
    2 months ago

    Your last comment,” I’m working at getting well,” Is probably the easiest answer for most people that you meet. They more than likely don’t have the knowledge of RA, or the desire to hear the multitude of of conditions that it causes. People who are close to you do care, and you can share with them as much as they want to hear. I say this, because. It will be overwhelming for them as well. ( your parents, etc.). I have not spoken to my family and friends about all of the complications of this disease. They may or may not happen, and I don’t want to worry them. If they are so inclined, they can research more. They saw the physical signs and knew that I was suffering. I live in a retirement community and choose to say, “I’m ok.” (After two hip replacements last year, and remicade infusions.

  • Lawrence 'rick' Phillips moderator
    2 months ago

    I love to say absolutely lousy, how about you? I do not seem to get the question a second time form the same person.

    I have noticed that my wife has started jumping in and saying oh he is teasing.

    But,, am I really? Leaving the question hang is the best part of that response. 🙂

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