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Experience, Resilience, and Change

At first I though I had things figured out, that I was tough, dedicated, and ready to kick this disease to the curb. I had high goals. Unrealistic ones no doubt – remission within a year – and I set out to conquer them.

Four years later and I know I was naïve. Remission within in a year? Nope, not a chance. I had no idea what I was up against.

Ways I’ve coped with living with RA

From books and my Ph.D. training

In my Ph.D. training, I study behavioral change and the psychology of managing chronic disease. I also live with an illness, so am often reflecting on whether what I hear in the classroom is applicable to my experience. Over the years I’ve read and heard a lot of complex theory on behavior, some of it absurdly stultifying.

I used to revel in the complexity, thinking abstract theory somehow gave me insight. Now, after years of thinking about it both in the bookish sense and in my own life, I prefer simplicity.

From my personal experience

Inner strength and purpose come from overcoming obstacles, learning from them, and knowing deep down that you will continue to do so for the entirety of life. This is a simple and guiding principle. Experience teaches resilience. I know people have been saying this for millennia, however, the message seems to be getting lost. I reflect on it often.

Advice from everyday people

Oddly, the most useful and practical advice I’ve received in coping with RA came from non-psychologists and non-professionals. Call it unprofessional advice. It comes from everyday people who face challenges and fail, then say, “enough, I’m going to learn to do it differently.” When they do finally figure out how to do it differently, they have the goodness to tell others.

Using simplicity to cope with RA

Most of what I find works is relatively simple and stuff you probably already know. You likely have heard it again and again. Nevertheless, there is a reason people continue to repeat these same types of maxims:

The results you want tomorrow come from sacrifices today. Stop looking for shortcuts, stop regretting, and get moving.

Be strong. Mentally and physically strong.

Be disciplined. That includes preparing today for tomorrow and sticking to the plan.

Be persistent – this is a protracted war – stick to doing what helps and avoid what doesn’t.

Listen to your inner voice that is tired of how things are, has had enough pain and disappointment, and propel yourself forward to make the necessary changes that will bring lasting improvement.

Guiding principles for confronting the challenges of illness

  1. Feeling better often follows action.
  2. Do not wait until you are motivated to make the changes you need to make. Motivation is fickle, commitment is lasting.
  3. Your future self is not more disciplined than your current self. The hard things in life will not be easier tomorrow so stop betting on it. Do what you need to do today.
  4. Self-knowledge is power. Improvement comes when you know your disease, habits, personal weaknesses, and limitations.

How my life has changed with embracing these principles

As I have come to really embrace these principles, my life with illness has improved drastically. I know, for instance, that if I wake up in pain, the best thing for me is to get moving. Laying around and entering the spiral in my head of feeling bad about the illness, my life, and the limitations pain imposes has never made me feel better. I know that I will feel better when I act, so no matter how I feel, I get going. That means doing anything other than dwell on my illness.

This is not always easy, which is why I say that motivation is fickle, and you will not be more disciplined tomorrow than you are today. It is a commitment to do what you know is best for you even when you do not feel like it.

Focusing on things I want to improve

Likewise, I have found that focusing on areas of my life I want to improve is helpful. It seems everyone is selling shortcuts, and everyone is looking for shortcuts. Like there is a cheat code out there that will make it all easier. The day I truly recognized that my illness was only going to get worse, was the day I started doing the things that have made my illness easier. This includes eating healthier, not overextending myself when I feel good, really involving myself with the people around me, giving more of myself to my family and children, making sleep and rest a priority, exercising regularly, and not dwelling on the things I cannot change.

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

  • Lawrence 'rick' Phillips moderator
    2 weeks ago

    I wish I could not worry about the things I cannot change. Frankly that is a big task for me. It has always been a tough thing for me. I am glad you are being successful. I think your list is wonderful.

  • LynnS
    2 weeks ago

    This article was really helpful to me. I too started out with the same naivety, thinking that I was going to beat this disease through sheer denial and strength of will. Six years later I know that it will only get worse. This author clearly and simply called out to me to just do what works, avoid what doesn’t, and do what you can to keep yourself strong while you can. I needed this.

  • Kelly Dabel moderator
    2 weeks ago

    Glad this was helpful to you LynnS. Thanks for taking the time to comment and share. Wishing you relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Lawrence 'rick' Phillips moderator
    3 weeks ago

    Focusing on the the next action has also helped me a great deal. I refuse to stop and stand still. We often used to say in political campaigns that unless we are advancing we are losing. I had standing still because more than anything I hate losing.

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