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rawarrior You keep on smiling, Kelly. The smiles are for you as much as for those who see that great smile.
I am right there with you. I broke down the other night and yesterday revealed to a friend how tired I am of stuffing it down and pretending I am fine, when I am not. Because, how much I am supposed to complain? I got very angry the other night. When it was done and over, I told my husband I wasn’t sorry for the outburst, because it is how I feel (he was very understanding). I was frustrated because I can no longer accomplish all the things I used to. I cried Kelly. Hugs to you friend…
It is ok to cry! It is ok to be tired of it too. Why would you go through difficulties all the time for someone who doesn’t get what you sacrificed for them? It’s perfectly acceptable to want those that are supposed to be your friend to get it. We are human and it is NOT healthy to keep it all bottled inside.
I wish I could give you a hug.
Wow did you hit that nail on the head. When I get like that my wife takes it personaly (she was physicly and menaly abused when she was younger. I try to explain that its not her. I have been wondering why I have theese outburst and this is an angle I never looked at before.
id like to ask a serious quotsien. im a 38year old male and since I was 14 have suffered with joint pain on and off,for the past year ive suffered with lower left back pain which traveled to my left hip,I then told my doctor who siad it was because of my back pain, I had pain in my hip. 3 weeks ago my hip pain got realy bad so I went to my doctor who sent me for an x ray,he then told me I had arthritis in both hips,now my knees are burning and my hip pain gets realy bad,so what do I do? worried.
Ibrahem, it does sound like it could be a systemic problem, maybe RA or another similar disease such as ankylosing spondylitis. Have you talked with a rheumatologist about how it is moving around to different joints? This is not normal “arthritis” for someone who is 38 – maybe 83 but not 38. An x-ray is not adequate to diagnose these diseases. You’ll need to get some blood tests & maybe an MRI or ultrasound where the pain/inflammation is so the doc can see it. A good dr will ask you a lot of questions and examine you thoroughly and not let you go without a plan of how to deal with this.
I understand completely the low points (often), but I don’t think I would survive if I focused on them. Yes, the temptation is there to curl up and stay there or sometimes to chop off my hands, but I have to remain focused on positives as much as humanly possible, or I will not make it. That’s my take on it. I teach therapeutic yoga in an effort to make my life meaningful by helping others however I can.
OMG! I understand wanting to chop off body parts. If we could just take them off and put them back on later….
🙂 I understand that completely too! Except at the same time I have never been more thankful for my hands. Until now I didn’t know how much I need them! People look at me strange when I ask the 5 year old to open the peanut butter jar for me. 🙂
Yes. A thousand times yes. Just the other day went over a friend’s house where I was asked how I am doing and the weight of the expectation for me to be “better” was heavy in their voice. Um, no. I am not better. I am not ever better, as in ALL better. I might not be stuck in bed today…if that is better then I guess I am better…for the moment. People try to understand in a very shallow way. I suppose this was an improvement to the people who are supposed to be close friends but get their feelings hurt if I am unavailable for periods of time, as if I am purposely withholding my company from them. And it’s not always because of pain, it is just harder often to do the regular stuff that all moms do, so that there are just times I don’t have enough left for going out to dinner, etc.
When peoria ask me how I am doing I always smile ( there’s that never ending smile) and tell them that I will get back to them with an answer.
Then if they ask again I tell then the truth- that way it covers the social requirement with out being awkward and if the ask again then I figure the really want to know and I can tell them the truth
I totally get this. In fact, just the other day, I actually said to my husband, “I know I don’t complain all the time, but I just want you to know that I actually hurt every day – even with the medicine I’m taking…just so that you know”. And I think I have 3 friends (only) who seemed like they understood when I told them my diagnosis – at least they were the 3 people who didn’t “blame me” or offer advice like, “have you tried acupuncture?” or “you should go gluten-free” – and so these are the 3 people I will occassionally share updates with. BUT just the other day one of them questioned me about nutrition and the whole inflamation thing and I realized she really didn’t get it. I tried to give the analogy of “would you blame a child with type 1 diabetes for having that?” and she said, “oh, I didn’t realize RA was auto-immune” – but then still kept up her line of questioning. It gets frustrating trying to prove that I didn’t make myself get this. I work part-time as a teacher and I’ve made modifications to what I do to lighten up the load and I don’t complain – coz I don’t want to depress the kids or have my boss think I’m unable to fulfill my responsibilities (funny things like, I used to sit on the floor with the kids for stories or demonstrations – but I can’t do that now). I think coping makes people think you’re fixed. No one knows I go home and crash – sometimes for days afterwards. I’m trying to figure out if there’s a way I can change things even more so that I don’t crash (but I know that most of that is just the nature of the disease). Thanks for this post Kelly.
I understand everything you just said. Last year, I had to stop teaching because I felt that I was no longer able to be the teacher my students deserve. I spent days after work at home in tears making that choice. You are not alone. Many hugs from another teacher who understands what it is like not to be able to sit on the floor with your kids anymore.
honey, i am with you. just had the same kind of thing go on with me. i went in all cheery eyed to mayo for my treatment the other day came out crying! i had pent up those tears and in the context of (reality check) my once a month treatment, i broke down over a change in the itinerary and the rude secretary (1st one i ever encountered at mayo). there was another RA patient who was angry and upset at the changes carrying on and was very vocal. i simply said to the desk person after she rationalized the changes were a step towards “efficiency”, that it had the exact opposite effect on the patient – it was very inefficient and painful – could she please pass that on to the higher-ups. i went into the bathroom and balled like a baby – what???? well, i always smile and speak with type A enthusiasm about how i am coping and dealing with this terrible disease. i forget to grieve now and then. that is what really went down. so girl, i truly appreciate your post – the heck with the interviewers – they belong on your list of stupid and annoying things people say to you –
Good for you saying something.
Thank you, Kelly, for sharing this article; it so much hit home for me. I so much appreciate your transparency and honesty as we walk this RA path together.
i am with you Kelly…just recently i’ve attended 2 youth camps (high school & college) of my church & everyone thought that i was doing well all these years until i revealed that i’m suffering from RA and they all couldn’t believe it.
II Corinthians 12:9 was evident in my life & i thank God that despite the pain, i can still smile because He is w/ me.
thank you for this post & keep on smiling! 🙂
I’d used to tell my patients I’d rather laugh than cry…it was easy for me to say that then before RA really took hold. My cheeriness did brighten their days of illness (or I’d like to think it made a difference). But now I couldn’t honestly give myself that same piece of cheeriness because not only does the pain of RA affect me, also chronic depression from long term illness. I go to the doctors appointments and try to be upbeat because that is what my soul craves just wish that when I tell them how really miserable I am they could see through the facade. I mean really…for how long can a person be down in the dumps and not try to pull themselves out just to survive? The docs are only human I suppose and many of them have not walked in our shoes so even though they treat us they don’t really understand what we’re going through. As I used to say “I’d rather laugh than cry”
My friends sometimes get mad at me — “Why don’t you ask for help? Why don’t you tell us when it’s bad? When you’re in pain?” UM…because that’s always? As for the interview you mention — I DO understand! 🙂 I sometimes cry when I think about the simple joys I used to have that I don’t have anymore: I used to walk to the lake and sit. Walk? 100 yards on uneven ground? Nope…Visit museums. Nope…Pick up my niece and nephews to give hugs and have tickle fights. Nope. And that, for me, is the hardest of all.
Keep fighting, Kelly!
Oh my goodness Kelly………I am laying in bed with a migraine and chastising myself for not being able to do what I had planned today. It is nothing extravagent, I had an acupunture appt. I was looking forward to and then hoping to feel good enough to get my nails done. I guess it sounds silly compared to what you accomplish in a day. Now I am sitting here crying. Oye vey as my grandmother would say.
What I was trying to tell her is how I simply couldn’t do those things – but I did not feel believed or understood at all. I guess what good is that you and I can believe each other & just take it as what it is. For example, there is no WAY I could get my nails done. I have not because my fingers don’t look bad most days, but they hurt & I could not hold my shoulder out like that either. But we can all do different things – and people should accept what others say they can or can’t do. Hugs! I hope your migraine goes soon! Mine are usually caused by my neck joints, so ice helps me – but again – I can’t assume that about yours I know..
Thanks Kelly…..getting my nails done has been something I have done for myself for many years. I guess it is a real psychological thing. I think we probably all have those things we so want to hang on to for as long as we can. I so agree with you…we need to suport one another on what we can or cannot do. Gentle hugs
Exactly. People should believe you. If you say you can’t, you can’t. It’s the commercials partially. I have come across people on the net saying humira did help them in a commercial way, they can run and such. I hope humira helps me, but I am not expecting to be able to run. I don’t like the reality of this disease any more than anyone else, but I don’t get to deny it. People like the interviewer are uncomfortable with the truth. Doesn’t make them any less of a jerk.
My PT is this very very serious chick. I’ve rarely seen her smile. I’m always smiling when I go there, because, though I know it’s gonna hurt a bit, I know that it’s helping. Anyway, my point is that, every time I walk in there, she asks how I am and I say, “I’m good, you?” and she always, ALWAYS asks, “really?” Sometimes I’ll tell her that today’s a rough day, sometimes today is actually a decent day, but I just think it’s awesome that she really understands that “I’m fine” or a smile does not necessarily mean “I’m fine,” and she actually wants to know. So rare in this world.
Sorry your pre-interview didn’t go so well. But it’s not your fault. There are plenty of things that they could show if they had any imagination. For instance, your brick wall thing (I can’t remember exactly what it was), or other things you did before you were hit with RA.
I listened to that interveiw with Dr. Borenstein, I could sense in your “voice” the reaction to his statement, as only an RA warrior could.I dont think anyone will ever understand the scope of this disease unless they are stricken with it.If they dont understand and are misinformed, its up to us to be honest about it.I am so tired of bucking up and forcing myself to do things, I just cant do…for someone elses confort level of being with me. Thank you for being real,and providing a safe place where I dont feel like I’m some thing I’m not.
This post made ME cry. Because unlike that person on the phone… I know what it’s like to read the list of “I used to do that but I can’t…”. Thank you for all of the information, inspiration, encouragement and understanding that you provide through your blog and FB posts etc. There have been MANY times when I was down and wanting to give up on fighting this stupid disease when I’ve read something you’ve posted and it gave me a flicker of hope. Thank you, Kelly. For whatever it’s worth, THANK YOU SO MUCH!
I believe that the hardest thing for people to understand, even our loved ones is that for most of us, it is a forever thing. Sometimes I can’t wrap my mind around the fact that I have changed. I am. No longer Superman for my family and it kills me… So now I’m working on Batman. Heh… But seriously, the eye-opening moment for me was when my pain specialist told me “perhaps even managed-pain-free is not a realistic goal anymore”… And even then it took time to sink in. If it took me , who is living it, time to understand it. How can they? It is a daunting thing…
Kelly I feel your pain. I also don’t complain and I don’t cry. Life is what it is. We make the most of it and we smile because if we wait until we are better to smile, we will never smile. Personally, I prefer to smile now… Be well, RA Warrior. Keep inspiring us and showing us the way…
I have been telling myself that I won’t cry for weeks now, but I am losing my strength in that regard. I found out a few weeks ago that my job is being eliminated and my insurance will run out at the end of June. I have RA and also have a lung lesion that may or may not be related. I have been taking Enbrel for a long time and had to stop until we figure out what this lesion is. It was discovered on a CT scan last July and we have been watching it. A needle biopsy was attempted but no diagnostic material was obtained – they missed it. So now I have a wedge resection scheduled as the composition of the lesion has changed which can be indicative of cancer. Also, the only meds I can now take are plaquenil and prednisone -short term solutions. The lesion must be identified in order to figure out what I can take. I found out that I can keep my current insurance if I pay a $1531 monthly payment – if I am unemployed and recovering from removal of a chunk of my lung how can I afford that? There is a state run program that I can enroll in, but it requires meeting a huge deductible. This plan does have a chronic condition component which eliminates the deductible and copays, but the RA lobbyists must not be as good as those for asthma or PTSD and Diabetes as those conditions are covered and RA is not. How can RA not be considered a chronic condition? Personally I have had this for over 40 years and it severely impacts my daily living. None of this makes sense and I am trying not to cry, but I cannot keep up this smiling and not crying for long. How can I advocate to get RA considered to be chronic under this plan? Any ideas?
I came across this site today and I really appreciate and understand your story, Kelly. I am 35 and was diagnosed not with RA, but PA and Hashimoto’s about a year ago. Based on my symptoms, my Dr. thinks I have probably had it for about 6-7 years. I don’t know anyone else with an autoimmune disease, and have felt pretty alone in this last year. My family and friends are great, but they don’t understand. Like many of you, they keep asking “how are you feeling?” I know they are just being polite, but I just say “I’m fine” and then change the subject. I made the agonizing decision to take Humira shots and they worked for about 2 weeks…until I had to stop them to have my gallbladder out. Now I’m back on them but they aren’t working yet. I am still holding on to the hope though, because that’s all I can do. As much as they try to understand, they just can’t fathom a lifelong illness. As of today, I’m still working full-time and pretending to be the same person I was a year ago. No one at work even knows that I’m sick, so after 8-10 hours of pretending, I’m exhausted and in severe pain by the time I get home.
Julius Caesar once said “It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.”…..so true!
Kelly , this was so good , you hit it on the button , I too feel this way , yea I post my pics of me in my races , runing and walking and that smile from ear to ear , but when I’m done I’m hurting all over and you ask then WHY do you do it? cause I can and I will and I rest as I should and I work as I should and only I know how much I can indore and as far as people understanding they never will , my brother for instance , found out I bought a stationary bike and couldn’t figure out why I would use one because of my athritis and all , and I told him “you know John I don’t have arthtitis I have Rhuematiod Arthritis theres a big differance and you will never get it ” so don’t worry if I can or can’t get on the bike you will never hear me complain and as of today you never have , I still go there and bath my mom and theres days I can’t but I do so I will always have ” the confusion of a smile” on me . thanks Kelly
I can relate to the title “The Confusion of a Smile.” I smile very easily, just part of my personality, but it doesn’t mean all is well with me, that I’m having a good day or not in pain.
Having RA for 35 years, I don’t talk much anymore about the daily challenges of living w/RA, sjogren syndrome and the joint damage that limits me physically. If I do, often a family member, perhaps in an attempt to make me feel I’m not alone — they are suffering too — will tell me of their itchy eyes or their stiff shoulder or achy ankle. I smile to myself, cuz they are clueless, but then how I could expect them to fully understand what it’s like to deal with this disease day after day for 35 years.
But thank goodness for places like this, where we RAers can come together and share our thoughts and experiences, and smile, knowing people here understand.
So true a post. My boss looked at me and said you must be all better now right. I couldn’t even formulate an answer. While I’m glad that the vicodin is now able to keep the pain in my feet from being disabling to the point he notices they are still so tender I can’t explain it. Tears come too easy these days.
my very dear friend who lives in beautiful alaska keeps asking me to come visit her – (she visits me once a year “stateside”) – for a achange. the last time she asked me she mentioned how we could hike everywhere! she probably knows more about me than anyone (besides my husband and my doc) and yet this is how she is thinking – totally not “getting it”!!! she means well but it is disheartening.
I don’t always smile and I’m often not upbeat. When acquaintances ask me how I am, I might say fine – but when friends or family ask, I tell them. Yes, it can be tedious to listen to, I’m sure, but I appreciate the support I usually receive when I’m honest. I am really helped by understanding and sympathy from people I care about, and as long as I do not focus only on my illness, I find that people are often sweethearts!
Hello, I’m 13. I am not 100% I have Rheumatoid arthritis, but when the doctor tested my blood, it showed up positive. 🙂 I can really relate to this story. It started in my feet first, becoming very uncomfortable to walk on. Then it got to a point that I could hardly walk at all, but I wasn’t a sissy. I mean, what sounds more pathetic than someone complaining about their feet, when you can hardly explain what’s wrong with it? A few times I weakly mentioned it to my mom, but she waved it off. Another thing was I didn’t know if this was a normal type of pain I’m supposed to toughen up to, or something I should be concerned about. I had nothing to compare this pain to. But then my aunt rescued me. She asked why I was limping all the time, and when I told her, she reassured me. it is NOT normal not to be able to walk. But I still didn’t get enough courage to tell my mom. Then the same thing started in my wrists, and grew to a point that I did not want to see another door knob, ever. The thing is it usually disappeared around evening. That would really sound pathetic. Hey mom, I can’t do my chores in the morning, but I can hang out with my friends! But eventually I convinced her to bring me to the doctor, through yes, some complaints. My mom was surprised when the tests came in, saying she thought I was complaining about writer’s cramp. What?! I love to write all the time. I get writer’s cramp about every so often. She thought I was complaining about THAT? I was embaressed that she thinks I would complain about that. Oh well. At least she knows now. 🙂
But another thing. I now have pain in my knees, and I’m scared. Very scared. I always loved to imagine what my future would be. Going to college, get married, have kids, and write books. If…. if I do have this, I won’t be able to have any of that. I’m just 13. That’s a lot of life lost. And I used to reassure myself that eventually I will be normal again, but it doesn’t seem I will ever be that way. The only comfort now is that unless my hands de-form, I can still have my writing career and do one thing that I love. But I’m still scared.
p.s I love this web site. I don’t feel weird or lazy and week anymore. 🙂 thank you.
Destinee,
Don’t ever feel wierd. I have had RA since my 20s, but only found out about it at age 52 after a long time and lots of destruction had already taken place. I’m one of those whose blood does NOT test positive for it, but my symptoms eventually could not be denied. I want you to know that you are special. You will live your life with a much greater understanding and deeper compassion for all of those around you who are “different” for any reason. Your heart will have the capacity to listen and see things that others can’t. Try to see this as a gift from God because he wanted to give you a chance to be extraordinary. Generally and extraordinary person perseveres through some sort of hardship, illness or great loss to come into a place where they are able to use their situation to try to help others. This happened to me. Although I still have everything that goes with RA, I am a therapeutic yoga teacher now. It takes me a lot longer to get up and get going, but I’m able to bring to my students a deep level of compassion and understanding that comes from my heart. Hang in there Destinee because you are special and a part of a very special group. I love this site too.
This is one of the best postings so far! I have had RA since my mid-20’s (over 20 years) & have damage & deformities in my knees. I was also just diagnosed with Sjogren’s. Getting around can be agony. I work, volunteer, etc. with the help of Mtx, Prednisone, Enbrel, Ibuprofen, etc. but it is never easy & I get exhausted.
My partner is wonderful & can usually tell when I’m hurting. The only problem is that I think it’s hard for her to fathom how debilitating the pain & fatigue can really be. I try not to complain too much because even I get tired of hearing it. She’s a type A+ personality & I’m not sure she believes that I was too before RA took me down.
Her family lives in Europe & they are great; they just have no concept of this disease. I’m fairly sure they think it’s the same as osteoarthritis. When we arrive there, between the jet lag, the time change, the RA & the wear & tear from the flight, I’m usually ready to collapse. I try to stay awake & engaged, keep up when it’s time walk (plenty of walking) & not look like a whiner, though it feels like I can’t take another step.
Last time there were 5 flights of concrete stadium steps that I was unprepared for & the car was parked 3/4 of a mile away. I know that they don’t understand & my partner’s mom thinks I’m lazy. Needless to say, I was crippled the next day – then we stood on a rugby field for 2 hrs. It’s important to me that they not think I’m just a slacker – I actually think I do pretty well in light of the circumstances but I know how it looks to them.
Thanks for having this forum where I can vent to people who understand!
I always try to smile and laugh it up. Even when I had some kind of virus that put me down for three days, I went to my GP with a smile. I have never hurt so much in my life (including broken bones and bad sprains/tears) but still smiled, up until the point where I was ready to pass out while sitting up being examined. I laid down and that only helped a little (but I didn’t pass out). Afterwards I was thinking that the GP must think I’m nuts saying I can’t sleep because I hurt so bad and sitting there smiling and cracking jokes.
The fatigue shows on my face much more than the pain, unless I get one of those special pains that feels like a hot knife suddenly jabbing me for no reason, those are visable most of the time. The fatique is harder to deal with for me than the pain, it doesn’t take the smile away but it is still visible.
Seeing the looks on family and friends faces or hearing the pain in their voices for knowing that I am in pain and having a hard time doing the things I used to do, thats harder emotionally. Thankfully they do understand and care, not questioning me like I’m lieing or faking. My son crying because I can’t play with him like I used to, that rips my heart out. The Sjogren’s keeps all but the worst of tears out of my eyes even if I can’t get words out.
Destinee,
I was 16 when I was diagnosed. I want to encourage you that you can still do some of the things you dream of, they may just be a little different than you planned. I was blessed to marry at 22 and have 4 kids. My husband was a huge help caring for our kids. He also is very patient with me when I’m just exhausted from work and life.
You can still write, even if your hands are painful, there is software called Dragon Speaks that is a speech to text software.
I don’t know where you live, but look up a Center for Independent Living for your county. I work for one and we serve anyone with a disability. JRA/RA count as a disability. They offer peer support and assistive technology to help you continue to do the things you love. An occupational therapist would be helpful, too. If your JRA affects your ability to get around school or do your homework, your parents can ask for a 504 Plan.
Good luck!
Yes I smile too even though I have tendenitis in my foot and walking is very painful. I smile even though my thumb is swollen and sore, even though I am facing back injections in a few days and dental surgery in a couple of weeks. I smile even though I have a son with severe autism. I smile because I chose to I chose to find joy because if I am sad and depressed then this disease wins.
I actually do understand. I smile and the doctors think my RA is not a big deal. Is it so hard to believe that we choose to smile, to laugh, and to defy our pain in such ways?
Dear Kelly,
Thanks for writing this, I hear you, I smile alot too!
So many times we all get down in the dumps, tough day at the office, things don’t go your way at home. We LET life get to us instead of making sure we MAKE life what we want. RJ is an example of someone who makes things happen and the first thing he takes care of is his inward appearance (how you appear to yourself) and then he lets that smile rip!
Thanks for this post and keep smiling. Sometimes I feel so alone in this struggle but then you post and I know there are others out there facing the same daily challenges as me. It really helps. I too smile and say I am fine all the time. I know people dont really want to hear the truth and I dont want to say I live in pain everytime someone asks. Maybe this is denial, not sure. Anyway thanks again, sometimes the RA life feels lonely.