Failing Expectations

Failing Expectations

It can’t be helped, but I’ve done a lot of failing expectations in my life with rheumatoid arthritis. While I’ve worked hard to make a good life for myself and am proud of that, it’s the ways in which my body has failed that weigh on me at times.

The drugs that failed me

I think about the drugs that I took as a child that didn’t work. But then (and even somewhat now) I don’t think of it as old drugs that were discarded because they didn’t help enough RA patients. Instead, I think of my body as failing to respond to treatment—like it was my fault instead of the drug.

As a kid, I remember that I wanted so much to get better. I’d wish on the stars out my window at night that the medicine would work, that my exercises would help, that the RA would go away. I was trying to will my body to be something else. It wasn’t just about me. I wanted to be better for my family too, so that I wouldn’t drag them down with my illness. I felt like I was failing them, but I was powerless to change my circumstances.

Now I am again struggling with a failed medication as an adult and it is making me reflect on the many treatments over the years that didn’t work or petered out. Some drugs I’m not sure ever worked, but it was what was offered at the time. Others seemed to work, then stopped. Still others I thought worked until I got my blood test results and realized it was just the hopefulness in my head.

RA challenging my current treatment

I have this joke that my RA has glimpsed a drug and just laughs at it with a sneer. “Hah!” it says. “That drug isn’t gonna cut it!”

While I know that exercise and physical activity is important for staving off damage from RA, I also know that it hasn’t been hugely helpful in improving my condition. Over the years I’ve slowly gained more damage and lost function. I do my exercise because it helps me to feel better, but it hasn’t stopped (or even slowed) my disease. It often feels like another failure. My mind asks: what if I had exercised more or better? Would I still have RA?

These feelings of failure are from the evil RA troll that lives in my brain and whispers in my ear. It’s the creature that doesn’t recognize that I did all I could, but that I just have a really difficult disease. It places blame on me even though I clearly have a severe illness that cannot be easily stopped.

Living my life against all odds

So while I feel the dread of failing expectations, I really haven’t. If you turn the story over, I can see how well I have done despite extremely challenging circumstances. I achieved my childhood goal of going to college, finding a job, and living independently. I’ve traveled and lived. I had the great fortune of meeting and marrying my husband.

From this perspective, I can realize that I’ve actually upended all expectations—not failed them. I have a fulfilling life with people I care about, a home I love, and a job that I enjoy despite a severe chronic illness and disabilities. I haven’t “failed RA.” Instead, I’ve made a life to be proud of with the added difficulties that come with fighting an illness, managing the damage, and coping with unruly side effects.

People who don’t know me may pity me or feel sorry for me. They may think my life is small and limited by the RA. But their expectations are low and their imaginations limited. I am proud to have failed their expectations.

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

Comments

View Comments (16)
  • Daniel Malito moderator
    2 months ago

    @Kelly Mack Failing expectations is just about all that RA is, I think. We fail our own expectations more than anything else, but we don’t dare tell anyone. That would be a fail in our books, and we all know how much we hate to fail. DPM

  • Kelly Mack moderator author
    1 month ago

    Good point Daniel! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • Jo J
    2 months ago

    Kelly, just yesterday I apologized to my Rheum for having failed another treatment. The sweet man immediately corrected me 🙂 Then suggested the next plan of attack. He also wants me to drop back to only stretching and ROM exercises.

    I’m having a little harder time dealing with another “failure”, and am trying to convert my mindset to the drug failing not my body. When I was first diagnosed I found all the biologic ads on TV signs of hope. This week they’re kinda pissing me off. And it’s so weird to leave a doctor’s office with instructions to back off on exercise rather than the guilt I typically leave my FP office with.

    I know myself well enough that I know in about 2 days I’ll be back to my optimistic self. I just need a brief period of self pity to reset my mood.

  • Kelly Mack moderator author
    1 month ago

    Hi JoJ–hope you are doing better. I think it’s totally ok to be sad sometimes and even have some self-pity. Sometimes that is just how we feel! But I agree with your doc that it is the treatment and not you! Keep on searching and finding your path. Fingers crossed that a treatment will help soon. Keep us posted when you can. Best, Kelly (RheumatoidArthritis.net Team)

  • Mary Sophia Hawks moderator
    2 months ago

    Oh Kelly! What a wonderful story! You have truly overcome so much that would have stopped others in their tracks.
    I really needed to hear this today. I have been struggling with my “failures” with this disease and where I see it leading me. But we all have to remind ourselves that we overcome much every day! Getting out of bed is a victory for us that others don’t understand. Continuing to do what we can, assess where we are each day and make adjustments are actually very complex processes.
    When the RA troll (I love that term!) strikes again, I will have a better comeback thanks to you.
    MS

  • Kelly Mack moderator author
    1 month ago

    Thanks so much Mary! Your comment has reached me at a good time too. Good to be reminded that sometimes just getting out of bed is a win–so true! Keep on fighting the good fight and don’t let that RA troll get you down! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • DianeTX
    2 months ago

    In many instances, RA has shown me how strong I truly am; it sounds like RA has done the same for you. There is something for living one’s life for one’s self and not listening to other voices. I say a job well done to you!

  • Kelly Mack moderator author
    1 month ago

    Thanks so much, DianeTX! Your encouragement is a boost! 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • rockcandi
    2 months ago

    As I’ve often found in your writing, you’ve put into words exactly how I’ve felt. I am always inspired by your determination and want you to know that I see so much hope in your life that gives me hope for mine! You’ve gone above and beyond what many would’ve expected you’d be capable of and you are awesome, inspiring and encouraging!

  • Kelly Mack moderator author
    2 months ago

    Thanks rockcandi! Your comment makes my day! 🙂 Keep on trucking! Hugs! Best, Kelly (RheumatoidArthritis.net Team)

  • Daniel Malito moderator
    2 months ago

    Kelly, for 25 years my body had a year-and-a-half countdown for every medicine I took. Almost to the day, they would stop working. Finally, my doctor made a try of an abscure biologic, and it actually worked, and has been working for years. I guess what I’m saying is don’t give up, what you need may still be out there. Keep on keepin’ on, DPM

  • Kelly Mack moderator author
    1 month ago

    Thanks Daniel! That is encouraging–keep on searching. Glad that you have a medication that is working and hope it continues to do so for a very long time! Best, Kelly (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    2 months ago

    I have often been very thankful that each time one of these medications has run its course a new one has come on to or is coming on to the market. I am currently at the end of the line of new things. But just the same this one is holding up well.

    I know I am blessed to live when I do and have access to the medications I have had. It will be awhile before i burn this bridge, but I trust something will be there.

  • Kelly Mack moderator author
    2 months ago

    Hi Rick, really good point–it’s wonderful that new medications have been coming out and making a difference. Glad that your current one is helping and hoping it stays that way for awhile! Best, Kelly (RheumatoidArthritis.net Team)

  • kat-elton
    2 months ago

    Kelly, you speak for me and so many others in this article. Thank you!!

  • Kelly Mack moderator author
    2 months ago

    Hugs to you Kat!

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