Stages of Rheumatoid Arthritis Heartache | Rheumatoid Arthritis Warrior

Stages of Rheumatoid Arthritis Heartache

Warning: This post is for the faint of heart.

Tired of the stages of Rheumatoid Arthritis grieving

Yeah, I’m probably not supposed to say these things. Whatever…

Some of these RA changes are wearing thin. I never wanted to be branded by anything negative. I’m getting tired of feeling like I’ve lost credibility because of the chronic illness label. Does anyone else feel like this?

Tired. I’m tired of hurting all the time. Also, I’m tired of having to pretend I’m absolutely fine and physically able around folks who can’t handle the truth. It’s physically so difficult to do that – I have to avoid people most of the time. Tired of losing that social interaction, but it’s too difficult.

You know what else? I’m tired of not being believed. A pharmacist just told me, “At least you are not really sick. We have really sick people.” But, we need these expensive medicines to treat the disease. Employers don’t like to pay the health insurance premiums for an RA patient either. Did you ever have to defend how expensive you are?eject button

I’m tired of so many things. I’m tired of the way it’s assumed this RA pain only bothers me when I mention it. If I’ve explained what it’s like, then why can’t I be believed? Stop telling me you know I’ll feel better tomorrow – it’s been four years of RA pain that only gets worse.

Remember the RA Help button last month? This time, I’m looking for the Eject button. Do you get the feeling there is no way out? Like Alice in Wonderland: Where’s the right door? What’s the right mushroom?  

Stages of Rheumatoid Arthritis grief: enough already

Sometimes, we just feel like we can’t take it anymore. The other day, someone left a comment about wanting to go in the closet to lie down and die from too much pain and too little understanding. And no way out. There are many others – I could go on.

Maybe you’ve read this post on RA depression. There is some discussion of the normal stages of grief and how they relate to RA. Would you believe I just read an article about the anti-depressant Prozac (Celexa) being used to fight Rheumatoid Arthritis in an experiment on mice? Wouldn’t that be convenient?  

My rheumatologist asked me if the medication “failures” depress me. I explained that I’m fine because I have had contact with others who live with RA and that has helped me. I know I am fine – I am just tired of being fine with RA. I’d rather be fine without RA.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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207 thoughts on “Stages of Rheumatoid Arthritis Heartache

  • December 6, 2011 at 8:56 pm
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    wow i just across thiss website by mistake and i cant belive what i just read . i have severe RA and im in pain almost every single day and always tired and very weak , swollen and well as u said tired of people looking at me as if i am normal cause i look normal i have some deformATIY in my feet but again if someone cant see it they just assume that your ok and if they think these meds are a walk in the park hahahaha they infusions are very costly i have tried 4 types so far with at home injections i read a part of a comment that you posted about the person wanting to go in a closet and just die god i can so relate … i try not to talk much about my RA as you stated most people look at you with two heads and its very bothersome… well just wanted to share and thank you for putting it out there REAL.

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    • December 6, 2011 at 9:07 pm
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      Hi Michelle, I’m glad you found us! I’m sorry you are suffering so much. I’ve tried several meds too without it working. I’m still trying. It’s hard like you said, but we won’t give up!

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  • January 5, 2012 at 3:33 pm
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    Oh my!! I totally agree with you…I too would rather be okay without RA. I’d rather not have to put on that mask whenever some one asks me how I’m doing today when they just saw me limping towards them. Should I be honest or just give a blanket answer and talk about something else (where’s the support in this case). I like to be brutally honest with people who ask me how I’m doing but then remembering to end the conversation on a positive note…generally has to be about something other than about my RA. It keeps people from avoiding you because they don’t know how to react to your chronic illness that has completely changed your life.

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  • March 2, 2012 at 2:00 am
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    Wow, that really nailed a lot of what I’ve been feeling lately. I was diagnosed with RA in December when my right hand became so swollen and stiff that I was unable to take my law school finals, and as a consequence had to sit out a term and take them cold in April instead. Whatever, I can take that in stride. I’m not sure if this is the right forum, but I am wondering if anyone has had experience with doctors who don’t believe in prescribing pain medication for this condition. My PA has prescribed Neurotin and Sulfazine, which to my understanding will hopefully help control joint damage. The neurotin makes me too ‘fuzzy’ to allow me to use it durring the daytime, and I’m honestly not certain its’ doing much for me. Perhaps I need to just give it time? But when it really hurts, and I am talking about losing feeling in my fingertips, and stabbing pain radiating to my elbow, and having essentially no use of my dominant hand what are my alternatives? My rhumatologist doesn’t want to prescribe any kind of pain medication until she sees if the other medicine relieve my symtoms, but in the meantime I feel lost. I have had to go to an urgent care facility twice now because I couldn’t deal with the pain. My blood pressure skyrocketed both times and I was prescribed vicodin. I am only 29 years old, and I feel as though people do not believe me and are treating me like I’m simply seeking drugs. If anyone has any advice, or had an experience like mine I would be greatful to hear it. I really like my doctor, but I feel like if I suddenly switch physicians, it will cement that perception.

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  • March 5, 2012 at 10:23 pm
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    what make me so tired are times when i need stronger medication because at time the methotrexate and tramadol just not working. My doctor internal medicine i have to convince him i need the stronger medications. I hate feeling when they talk to me as though i am a typical junkie.

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  • July 29, 2012 at 7:20 pm
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    So glad I found you all! I am a new RAer, diagnosed in April, but lived with the disease for years before I realized something just wasn’t right! I think it is great that we all have each other here on RA Warrior, but the reality is, if those that are supposed to love you don’t and won’t understand the disease the pain of RA is that much more intense. So we move about day by day in the physical pain that attempts to steal the joys in our life, but we have to also cope with our wounded hearts because those that we have chosen to share our lives with have chosen to not understand. Hope this gets easier, I know that most, if not all of us would be that understanding spouse, friend, family member…keep fighting my brothers! & sisters!

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  • August 16, 2012 at 2:06 pm
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    I just seen this today. It made me cry. I sent it to my closest circle, and I titled it “Finally, someone who knows how I feel”. I never realized that I try not to complain, as I am sick of hearing myself complain. I never realized that I push myself too hard to keep up with the pace. Thank you for saying it.

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  • August 31, 2012 at 10:25 am
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    YO hit the nail on the head every time Kelly. A million thanks.

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  • September 11, 2012 at 3:19 pm
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    I was diagnosed with R A just in the last month, I never really knew a lot about it up until now. I lived with joint pain and fatigue and iron defiency now for about a year now, the iron level is up to normal now after blood transfusion and iron infusion. I still have joint pain but thankfully right now it is progressing slowly, I am on Plaqeunil 400 mg and hopefully that will keep it slowly progressing. I haven’t told many people about my diagnosis but the ones I have told I have been told “I hope you don’t end up in a wheelchair” or “well as long as you keep moving you should be ok”. While I agree that excercise is important some days my knees don’t agree! Dropping 75 lbs has also helped my ankles and knees a lot, although they still hurt. Taking clothes out of a washing machine is rough at times feels like my fingers are being twisted. I love to sew, knit and crochet and it hurts but I will keep that up as long as I can. I walk every morning and I’ll keep that going also. I refuse to give up, it will have to force me down! I agree with everyone’s posts and thank you for sharing, this is new to me and I have a lot to learn.

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  • November 9, 2012 at 5:07 pm
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    I fully agree!!!! The worst part of this disease is not being able to hold down a job. With out a job there is no insurrance,Thus making it even harder to get the right care or treatment. I have an amazing partner who doese everything poss. to try to help while I’m in pain witch is dailly now. But because l live with her they say she makes too much to be able to get any govt.help. it’s a neverendingfusterating painfull cycle!!! It is good to hear that there are others out there dealling with RA and fustdrated as well. But we jst keep going because we have to? Thak you for your site!

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  • November 26, 2012 at 5:06 pm
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    Oh, yes! This is where I am, so tired of this disease stealing my life and just when I thought it couldn’t get any worse it does. Every joint from feet to jaw, allergies to all but one drug and the other one failed, waiting on the next one, shocks of pain even when resting, …etc…etc…
    It’s unrelenting and progressive, and I want my life back. I am realistic enough to know I’m in this for the long haul. That doesn’t help.
    Where’s that cupboard? I just want to lie down until it goes away.

    Believe it or not I’m really a very positive, sociable, active person! See – this disease is a thief.

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  • March 6, 2013 at 12:42 pm
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    I have just been told that i have ra i dont know wht to be expecting on this i stay in pain most of the time and when i read up on it well it just made things worse. I have no one to talk to about this or wht to expect or just to be there for me so if someone wants to befriend me we shall be there for one another

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  • March 9, 2013 at 11:31 pm
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    Kelly I wish I had a rewind button! To when I didn’t have it so I could have done more. I have a 3 year old and worry daily what I’m not going to be able to do with her that I did with my older too. Is she going to be upset that mommy doesn’t feel good and is tired so often. I would love eject but I would settle for rewind! I remember after I was diagnosed just thinking Im 38 why couldn’t this happen in 5 years 10 years from now I have so much to still do! Now I’m just grateful for each day that I can get out of bed and do anything with my family.

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  • April 11, 2013 at 12:34 am
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    I am all about this one.I’m tired of my family saying “it can’t be that bad.”
    I am also tired of my RA doctor, she does not seem to believe me or care, she is my third Rheumatologist
    I am having a few bad weeks as well, depressed, angry.
    I want to work in my yard

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  • May 24, 2013 at 12:15 am
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    In reading these posts I realize that most of the time I don’t feel this way. I have moments like the other day when daughters girl scout leader was looking for volunteers and I had to turn her down because I am not dependable enough. But I think the reason I am different is because I have a nine year old son with severe autism. So when I don’t volunteer its believed that its because of him and not the RA. I am an admired person for raising my son with a very visible disability but not for getting up everyday and dealing with RA. I just don’t get a lot of the criticism like many others are describing. Plus I have a supportive husband who appreciates the effort I make in taking care of our kids and keeping the house somewhat clean. I am a little worried about seeing my sister this summer as she has OA and type 2 diabetes she believes she is sicker then anyone else in the family. I am afraid she is going to be impatient with my limitations. I haven’t seen her in 3 years and my ability to walk has really decreased since then.

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  • July 21, 2013 at 5:09 am
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    Kelly,
    I appreciate your honesty. Thank you. And thank you for that wonderful reset button (along with the eject button;) for whenever I hear, or say, or am tempted to say, “whatever.” Lovely, the reminder to “dwell well.” Your helpful blog dwells well and helps me and so many of us on this journey. Thank you for sharing your gifts.
    I hope this is a good day for you,
    Helen

    Reply
  • July 22, 2013 at 6:17 pm
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    Wow I just read this post and its like soneone read my mind. Wow.someone else knows how I feel on a dayly bassis. Please just make it stop hurting . Make it go away I don’t want this r.a anymore

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  • January 20, 2014 at 11:48 pm
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    Hi Kelly

    I think I am emerging from a deeper sense of hopelessness.
    Yeah. Happy New Year another year of facing this s.. t
    I cried everyday last week. we when I wasn’t sleeping.
    I sleep minimum of 12 hour and sometimes 16 or more.
    Occasionally around the clock, Im really struggling to hold onto any work
    at all, I’m freelance or it would have stopped working a long way back
    I have been on toxcilizumab for over. 18mths and yes it has helped reduce the
    life testing flares .. I feel I have disappeared, at other times I don’t feel seen as a person
    who needs care. Other times I’m sick to death of having to say ‘sorry I can’t do this
    or that as I am ill’ it’s taken my privacy. I don’t want to be in the position of telling
    others about my limits which worsen. 8 yrs diagnosed & every month lose more
    stamina, hope ‘ body strength. The sjjgrens has been so bad edpecially in my mouth
    I have lost about 3 stone this year and often can only eat yogurt or Ice cream
    Stenosis in my back, told I have vasculitis (!) hernia, parathyroid scleclorsis (can’t even spell it)
    And now the oral & maxilla consultant has informed me I am elevated risk of lymphoma
    How am I going to die I wonder , pick n mix!
    Thanks Kelly for the brilliant site. Tess xx to all RA WARRIORS

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  • May 24, 2015 at 7:25 am
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    My name is Stefanee I have been in severe pain since my early 20’s but could not find a Doctor who would listen or cared. The doctors always just told me I was tired or exercise more or I am depressed. Recently after visiting a new doctor she listened and when the blood work came back I was told on the day before my 37th birthday that I have RA. I had a feeling but when she said it my mind went blank. I couldn’t believe this was happening. I am a single mother of a 9 year old and 14 year old girls and I need to make sure this wont affect my life or theirs. If anyone has suggestions that knows about this disease I would love to hear…. Sad,Angry,Confused, I await your replies..

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    • October 30, 2015 at 10:22 pm
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      Dear Stefanee, I’m sorry about the diagnosis. I don’t know if you can “make sure this won’t affect” your life or theirs – but you are still you. You are still their mom & you will find a way to do the best things for them.

      Reply
  • October 29, 2015 at 9:09 pm
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    Kelly,
    Sorry to learn of your recent troubles. You commented that it would be nice if Prozac, like some other psychotrophics, was also prescribed for RA. Well, one is – Cymbalta. It is a psychotrophic, that is also great for nerve pain, one of the components of RA. It is available in generic form – duloxetine. Has helped me with sciatic pain from deteriorated L4-5 vertebrae as well as with RA pain. Stay strong – you are in my prayers.

    Bonticou

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  • November 9, 2015 at 9:55 am
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    These posts are from 2010. It’s now 2015. I found this sight a couple of months ago.Kelly, I thank God for finding your blog. You put into words what I feel everyday. I don’t feel alone anymore. Peace and love to you and all my new warrior friends

    Reply
  • January 30, 2016 at 1:05 pm
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    What I find exhausting is the endless forms. Insurance, disability, critical illness, best doctors, MSP, pharmacies, endless doctors, tests and drugs. I feel like a lab experiment. These doctors,do not communicate. I am 100pds. They are all adding prescriptions. I am the one who endures endless drug reactions and overdose reactions. It has taken over every aspect of my life. My Rheumy said to me cancer is worse. Wake up and smell the coffee. At least with cancer you do not need to fight for be idiots, recognition or validation. I am seropositive with CPP of 300 and CRP of 84. However, the RA label does not give me access to CI. So now I will suffer a financial death. I am a financial planner. I incorporated my business, but lease and credit cards are on personal credit. What business can survive owner absence for six months. I am going down in flames. At least with cancer you get a choice. They cannot force you to take drugs.. Most of all there is an end in sight. People treat you with compassion not contempt.RA SUCKS!

    Reply
    • January 30, 2016 at 1:36 pm
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      I’m sorry Lise. The lack of recognition adding those other problems on top of your illness & disability makes it unnecessarily harder.

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  • May 8, 2016 at 2:36 am
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    Hi Kelly, I’ve just found this post and it looks like I’m reading it about 6 years after you originally posted it. Yet, for me tonight it is as fresh and accurate as if I had just spilled it all out myself. I too am tired, so very, very, very tired.

    Like you I’m tired of hurting, I’m tired of being exhausted, I’m tired of pretending like I’m ‘normal,’ and ‘fine,’ and ‘good,’ and my same ‘old’ self. I am none of those things. I think I spend so much time pretending to others that I actually fall into the trap of deluding myself that I’m the ‘same.’ I chastise myself for my endless daily failures – to keep a clean house, to keep up at work, to maintain social relationships, to brush my teeth and wash my hair. Then I realize that there is a reason those things have spun out of control.

    Oh yeah, I have a chronic illness that I’m in denial about. There is no freedom from it, no escape from it, and yet I still manage to find myself in complete denial about it. I’m tired of iterating through painful recognitions 5 years into it that this is never going to go away. I’m tired of commercials for the drugs that show people actively participating in life, savoring movement in delicious smiling slow motion.

    I’m tired of doctors staring blankly at me as I try to put words on my pain and suffering. I’m tired of being told by someone who may be educated about my disease but does not suffer from it that they cannot account for my pain because their computer screen is showing no evidence to indicate that I’m suffering from it. I’m tired of letting myself down even with these people by downplaying my situation. Even to my ears it sounds implausible.

    I’m tired, tired, tired. I’m so very tired.

    Reply
    • July 22, 2016 at 11:29 am
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      Thank you so much for posting. There is no time gap with understanding. I feel as validated by your words as others are by mine. “Even to my ears it sounds implausible” – perfectly sums it up.
      I think I’ve spent much of the last 10.5 yrs trying to figure out the solution to this paradox. What can be done when every joint is affected and/or there is no moment of reprieve and /or the commercial pharma “cures” don’t work? And as you said, they “stare blankly” when you try to explain? We can’t escape. We are blamed. We respond by “pretending” in an effort to cooperate.
      I’m not giving up at my life or trying to improve our lot, but I agree it’s so very tiring and hard.

      Reply
  • July 26, 2016 at 12:47 pm
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    Kelly:
    I KNOW WHAT YOU ARE GOING THROUGH AS I AM RECORDED IN CANADA AS THE WORST CASE ON MEDICAL HISTORY FOR RA. I FOUND THAT DEALING WITH PAIN IS A LOT OF SICOLOGICAL ADJUSTMENTS AS MY PAIN NEVER GOES BELOW 9 ON SCALE OF 10.i HAVE BEEN SUFFERING from RA SINCE I WAS IN MY 30,S NOW 73 YEARS OLD. I go through a lot of anguish when I try to do any type of work even typing this comment. I found a solution that helps to calm RA to a point, one is called U.V.I.G IMMUNE GLOBIUM once a month. and 10 percent methotrexate once a week. I have been in this solution for 5 years and even through my kidneys shutting down.
    You can read my story in a book that I wrote with great difficulties and it explains what as an RA patient. Nobody seems interested in it but here is the place and title “MY DEATH MY LIFE A TRUE STORY BY JOHN MAJOR ON KINDLE BOOKS ON AMAZON CA.
    A FREE COY WAS AVAILABLE IN THE PAST. I wish you luck in your legal battle as I have been there and done that. I been trying to save my left leg from rheumatoid vasculitis for over 5 years and because of financial problems and very few donations to my website
    http://www.thevetkillednypetcat.com I do not know how long that I have left on this planet. This time last year july28 I was in critical care fighting for my life as the Ra CAUSED AN INFECTION AND SHUT DOWN MY KIDNEYS. I MANAGED TO SURVIVE BUT THE RA HAS INCREASED BECAUSE I AM LIMITED TO ONLY TO THE I.V.IG AND LOW DOSE OF METHOTREXATE 10%. So I really wish you luck in your pursuit of a legal case against lousy husbands and bad lawyers good luck.
    john major
    majorjohn98@gmail.com

    Reply
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