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
- Feeling better often follows action.
- Do not wait until you are motivated to make the changes you need to make. Motivation is fickle, commitment is lasting.
- 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.
- 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.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?