Through the looking glass

Through The Looking Glass

RA Guy Adventures of RA Guy 21 Comments

I used to think that accepting the reality of my rheumatoid arthritis meant that I would be giving in to this disease.

As long as I grabbed on to the life that I wanted (thus avoiding what was obviously becoming the life that I had), I figured that I would be okay. For a while this actually seemed to work, and I thought I was happy. But as my RA continued to progress, I became more miserable, and less able to cope with what was happening to both my body and my mind.

The idea of failure has such a negative connotation, that I think most of us rarely want to admit that it plays any role in our lives. I think that sometimes it’s easy to forget that we often get to the place we need to be, as a result of having visited in the past many places that were not good for us. For me, this has definitely been the case when it comes to my ability to cope with my illness, and I have no shame in admitting as much.

I used to think that accepting the reality of my rheumatoid arthritis meant that I would be giving in to this disease.
You see, for me the mistake was–even though I didn’t see it at the time–basing all of my coping mechanisms on one false premise, which was the thought that the pain would actually, one day, go away. Everything I did, and everything I thought, fell under the hope that just as quickly as this disease entered my life, it would just as quickly exit. And if today wasn’t the day, then tomorrow definitely would be.

And looking back, what I did, for years on end, was to inevitably set myself up for failure, each and every day. When I woke up, and the pain was still there, I would feel like I had lost yet another battle…and it got to the point where I started to wonder that if each new day was immediately going to be chalked up as a loss, what was the point of living this type of life?

My biggest breakthrough into the world of acceptance came on a day, around a year and a half ago, that I still remember quite clearly. I was in one of my worst extended flares to date. I could barely stand up, much less move. I had started resorting to peeing in a cup. I was using what little physical strength and energy I had to go see my rheumatologist, or to go to the local clinic for yet another anti-inflammatory injection. And as I got through each and every minute, there was one thought that permanently remained in my head:

Things have to get better tomorrow.

(Once again, setting myself up for failure.)

One day, though, something clicked. Instead of constantly telling myself that things had to get better the following day, I found myself asking: what if they don’t? And instead of feeling frightened out of my wits by such a possibility, I told myself that I needed to start preparing myself–physically and emotionally–should this be the case.

And this was the exact moment when I entered into my own Alice-in-Wonderland-like wormhole, and passed from the land of denial into the world of reality.

I’ve stayed here ever since, and it’s been absolutely wonderful. It hasn’t slowed the progression of my disease, but it has allowed me to cope better than I previously ever could. A while back I shared on a Facebook status that for me, a positive attitude doesn’t mean that I hope the pain will go away; instead it means that I hope that I will be able to cope with the pain even better. My life, and my outlook, have improved drastically since I adopted this philosophy.

I have not lost hope, and I have not given in to my disease. What I have done, however, is base my thoughts and my actions upon a premise that does not set me up for failure with each new day. I no longer wonder if the pain will be gone when I wake up in the morning. I *know* it will be there, and I’m okay with this. Most importantly, I’m prepared for this. (And on those rare days when I wake up not feeling pain, I appreciate it for the beautiful–albeit temporary–gift that this is.)

Many people write to me, to say that they wish they were able to cope with living with chronic illness as well as I seem to be able to do, and that they want to be able to have the same positive attitude that I express in many of my posts. But, they go on to share, their lives seem to be full of so many different failures, that they don’t know what to do. They don’t know how to keep moving forward.

I write these words today to share the following: were in not for the fact that I experienced so many failures myself, when it came to coping with the continual daily challenges of living with chronic pain and disability, I don’t think I would have ever been able to find the comfortable and peaceful spot where I currently am; a place that is still marked by pain and disability, but that is also full of reality, happiness, acceptance, and hope.

…a world where our diseases no longer hold us back, but only continue to push us forward, into a brighter and better future.
Each time I receive one of these messages, like those that I describe above, I secretly smile to myself. I smile, not because I know that someone out there is struggling, but because I know that soon there will be one more person who passes through this wormhole, into this “alternate” reality of acceptance that I have only recently discovered myself: a world where our diseases no longer hold us back, but only continue to push us forward, into a brighter and better future!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 21

  1. Jan

    Thank you so much for writing about this. Having only been diagnosed with RA a year ago, I still fall into denial and know I need to get to the point of acceptance.

  2. Donna Hays

    You have to live life no matter what has happened, where you are, or what disease you have.

  3. Carol

    I just finished reading your article on Through your looking glass, and thank You for your insperation and up lifing attitude, I so look forward to hearing from you everyday. I have progressive RA degenrative.Doctor says its gonna get worse. thru out my body, and am finding it difficult, getting thru to people in my family especially my husband of 45 years. Wow” I still can’t believe I’m married that long to someone who only thinks of himself, sad but true. sure I sent them all the 60 minute video you supplied Thanks for that too. They just don’t get it and think I will wake up tomorrow and it will be all gone. They treat me like I’m suppose to do for them like always. But I’m not letting it depress me, I am preparing myself for the worst If and when it happens. I kinda live now by the 5 minute rule to keep myself motaviated most of my days telling myself I will give it 5 minutes, so believe it or not I really accomplish alot thru out the day. Don’t get me wrong when as you know if you can’t get out of bed well so what .I Love watching my big screen TV in bed. I was like that getting out of bed and hoping today , no pain I thought like you said if you give up Hope, your doomed. but there is still Hope I,m finding it thru my 5 minute rule. It makes life so much easier. Thank You” for being thereRA Guy” God Bless You all”

  4. Debra Myers

    What an inspiration!!! you are to me, and so many others out there!!! Wishing you birthday blessings. And I hope you get your birthday wish 🙂

  5. fridawrites

    It’s like surfing–ride the wave. Fighting the wave can lead to feeling drowned or at least early exhaustion. Much easier to float, though we may not go the direction we want–we’re at ease.

  6. Julie Helsabeck

    You are just awesome. I often think that when I read your posts. Thank you for somehow (in a way that I have not yet completely figured out yet) twisting and cajoling your experiences with this crazy disease into hope and inspiration. And for so very often…leaving me with a smile.

  7. Beth

    sometimes I have the feeling that the “rug” will be pulled out from under me when I’m having a good stretch. What will put me over that edge? This disease can be cruel but only if you let it. I have to change my defeastist attitude and find the next step, or next answer to the current problem. Not make up what could happen or what could be decided. And really, this is like any problem that comes up in life. Taken in steps, its manageable. In a mound, its a scenic picture that awes. Hugs to all.

  8. fridawrites

    PS–I think it’s not from failures–it’s from losses or changes in the course of your arthritis. Failures indicate your responsibility, that you could do something different.

    It’s a mark of perseverence that we try so hard. It’s a mark of our smallness in the universe that we hit a wall that we can’t climb over, that we have to keep working on the other side of it.

  9. Nan Hart

    As usual another profound and insightful blog post that really drives home the true nature of RA. I will do my best to incorporate your wise advice and attitude starting today! Nan

  10. Lana

    I know what you mean, RA Guy. It is a process and it gets better with practice. I guess instead viewing the situation as a destiny to failure which means that we cannot move forward, I can choose to live in the moment and truly accept the reality in front of me and that way, I can actually move forward. We spend too much time dwelling on the have-nots without seeing how truly blessed we are with the things that we do actually have. My belief is that every good day and a good day that I can spend with my children. I have been fortunate to have more good days than bad so I treasure the good ones because I cannot be certain of the future. I know that this means more days that I can to give my children a mother is able to be hands on even if it is not the same as it used to be. I am so very grateful that despite RA and despite the pain of living with it, God has given me more time to focus on my family because I know thing can quickly get worse. I also understand the emails you get that people see you coping so well. I receive similar ones and I try to dispel the myth. I have good days and I have bad days but I have made a choice to not tell the bad ones ruin my life and destine me to an attitude of failures. Finding that sphere of acceptance is a process in of itself and it takes a different path and different timing for each of us. I also think that it is a process we have to revisit depending where we are in our chronic pain/RA journeys.

  11. Bryan

    Great comments and posts, all of them. I am trying to find my way through that process myself. To be honest it is an uphill battle to say the least. It is good to hear and read about other who are going through a similar battle. Some have made it farther up the hill than other, but we all have a fighting chance. Keep up the good work and the fight. I was struggling for unknown reasons for two years before I was diagnosed with RA over three years ago. The road has been very long and riddled with more potholes than anyone can count. But, I am grateful for the journey anyway, it has been very insightful in many ways.

  12. Jerry

    Acceptance and letting go is to gain freedom. For me I’ve turned it over to God. He has told me he would heal me but he didn’t say when, in this life or the next. That’s my hope!!

  13. Susan

    Thanks for sharing … Reading your post, it sounded vaguely familiar to my experience of acceptance. I, like you, wished and hoped that my RA pain would disappear and I would magically wake up in the morning pain free…setting myself up for constant failure and disappointment….then the flare from H**L hit me like a freight train…and for the first time I felt the need for a wheelchair…RA had attacked my feet and I actually had to crawl to the bathroom…my psyche was in total shock…them it dawned me…my RA, was not going to magically disappear. Only then, did I even entertain the thought that I would have to accept that my RA was truly a chronic and progressive disease. I felt, as well, that accepting would be like giving into the disease. But the shocking nature of that aggressive flare woke me from my denial in such as way that I could not deny my RA any longer…the truth was staring me in the face…I have RA and it is not magically going to disappear from my life, and I just better accept things as they are and not wish for a life without RA, because that is not in the cards for is the hand I was dealt. So recently, it has become a time for letting go of denial and time to practice some Radical Acceptance. Thanks for Sharing…

  14. Laura

    I so understand your article. I just got home from rheum with both hips being injected. I have progressed to being on methotrexate, plaquenil and sulfasalazine and Vicodin. I have fought this for a few years now since diagnosis. I started with palindromic rheumatism to RA. I am angry that I can’t walk as far, can’t do my beloved yoga and Pilates like I could. I am only now starting to realize I have limitations. Thank you for the wonderful article.

  15. Tina Tarbox

    I learned to cope with RA as a child, and I think it was MUCH easier since I had no frame of reference in which there was no pain (since I was so young when I was diagnosed). But, I had a lengthy remission as a teen and had to learn how to live with terrible pain once again as a young adult. What helped me was to really draw from my childhood experience and recapture what it was that kept me going. I learned that it was that acceptance of reality. As a child I didn’t “know” that I wasn’t supposed to hurt. I just accepted the pain as normal. But as a young adult, I had much more difficulty until I finally realized that I would most likely hurt for the rest of my life. It was liberating to finally give up on that aspect of my illness. I make the very best of what I have within the framework of the reality of RA. Thank you so much for articulating this to others!

  16. Ms. Rants

    This is what I wish I could articulate for people who are recently diagnosed and are having a tough time accepting it. They see my positive attitude and figure that I’m in denial. I don’t know how to explain that I’m not more positive (most days – I certainly have my bad attitude days) because I expect to get better, but specifically because I know that I won’t. Coming to terms with that was difficult (though a bit easier for me, I think, because I was very young), but it makes all the difference. I sincerely hope that everyone can one day accept their situation. This doesn’t mean they shouldn’t fight to have the best life possible, but I do hope they find a way to keep their expectations realistic so that they can be happier. You did such a wonderful job of explaining all of this and I hope that many people benefit from reading it.

  17. Lesley Hurley

    I have just read your blog. I was diagnosed 10 months ago and first of all felt relief that I had a diagnosis, one month after having been told I had RA I was then diagnosed with Ulcerative Colitis another auto immune disease a double whammy of auto immune diseases. I thought I was coping really well, with both of them luckily I was diagnosed very quickly with both of them so had the medication I needed to start to make me feel better physically better. I have had only one small flare with the RA and one bad patch with the UC, and thought I was doing really well until on holiday last week my partner said that I was a nightmare to live with as I was always angry and no longer the person he knew. It made me suddenly aware of what was going on and I realised that I had not been coping I was just hiding from acceptance and I was and am very angry still at getting these two diseases, but having now acknowledged that and also my partner is now aware of that I feel better. Your blog made me realise that we all seem to go through these feelings and that we are not alone. Thank you

  18. Angela

    I just read your “through the looking glass” I related to your feelings and could completely understand “failures”. I lived as you did in denial for so long, well until the pain and joint damage was too overwhelming to ignore. I would go to my rheumy appointment with the hopes some how I would get good news… Fooling myself into believing that one magical day I would wake up from this nightmare, but the day came I had to face the ugly truth this is no dream it is truly my reality. I now live from moment to moment trying to make the best of what life I have. I’ve learned to find joy in this life no matter how painful the day is. I keep a little secret hope in my heart that someday a cure will be found. Thanks for sharing your personal journey.

  19. Sandy

    I have battled RA for 32 years. I call it a battle because despite the pain, fatigue, joint damage, and personal losses I’ve suffered, I will never give up. Yes, there are days that I give into depression, fatigue, pain and stiffness. During those times, I sleep, watch tv, or lose myself on the internet. Those are the days I need to re-group and strengthen my inner my resources so that I can rise up again and fight this disease called RA. I am a WARRIOR, and will fight until my last breath.

  20. Nicole

    Thank you for another beautiful post. The last 3 years have been such a surprise. I feel that I have an understanding and relationship with the Dragon that is JRA. I don’t know if what I have been experiencing are side effects from long-term medical treatments or side effects from having JRA for 14 years but the newer health issues that arise often send me into a spiral. I don’t know this terratority and the time spent searching for cures or answers can leave me feeling gutted. There just may not be any solutions and struggling to maintain the stamina I had several years ago is dispiriting and joyless. So, I must create a new reality. I have no idea what it looks like but giving up the struggle feels easier – the constant underlying anxiety dissipates for a bit. I do this imperfectly, to be sure.

    I am most certainly not the perfect patient: that person you see in a movie who is ill but so graceful about it all. They are rarely angry and are almost Yoda like in their nature. In my mind’s eye they are always dressed quite beautifully as well.

    I move closer to embracing the magical chaos of it all because that is the truth of this moment.

    An abundance of joy and gratitude to you,

  21. Linda

    Hello, My name is Linda, I was diagnosed about a year ago with rheumatoid arthritis, Like so many there are good days and bad days, but each day I awake is a blessing as I have another at life, Sure some days it’s hard for my body to move, But I hold onto hope and faith, It’s not always easy as I’m human, But it’s a new day and I’m still alive, One day I can’t open a bottle or a jar, the next I can open anything it seems, Never knowing day by day how much of my body will be afflicted by pain, It’s never just one spot, it’s multiple,Does anyone else have trouble walking due to their feet hurting? …. There are those in my life that think there’s nothing wrong with me because each day brings on something different, So when they see me having a good day doing yard work/ house work, then the next day I can’t seem to close my hands, or it’s hard to walk, Some in my life don’t understand, I’m the one that has always been there for others, and I still try hard to be, But somedays I can’t even close my hands or walk very well, Those days I can’t drive, And it’s hard to get up any energy, But we mustn’t give up hope, We must do our best not to allow rheumatoid arthritis or any disease to rule Our Lives, It’s all about our own attitudes that can make a big difference, I know we’re all human and we’re going to have our bad days and it’s okay to say I’m having one of those days. Or I’m in to much pain to do much today, But I’m looking forward to what tomorrow can bring, That’s keeping hope, We just shouldn’t allow a bad day to keep us there as we won’t enjoy a good day if we stay with the bad, Keeping you all in my prayers,…. May God cover you with his blanket of love,and when you awake may you be covered with his blessings from above,

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