Life With Chronic Illness: Is It The End, Or Just The Beginning?

RA Guy Adventures of RA Guy 11 Comments

Earlier today, as I dropped my sister off at her office so that I could use her car to run some final errands before I return home to South America this coming weekend, I couldn’t help from being momentarily transported back to my last visit here to Columbia, Missouri, which took place a few years ago, back before I had even started writing this blog. And as I drove around, noting that temperatures today would reach the low 100’s as opposed to the low 20’s last time I was here, I couldn’t help from thinking about how my life is such a polar opposite–in so many good ways–from what it used to be.

During my previous visit, I had already been living with rheumatoid arthritis for many years, and while I considered myself to be “experienced” with the challenges that I had to face, I started to realize that my coping skills were not keeping up with the progression of my disease. When it came to my physical life, I had a hard time walking; when it came to my emotional life, I seemed to have no problems sprinting–faster than I could ever imagine–down a very precarious slope into a deep and dark depression. Feelings of the “end of life as I once knew it,” which sprouted immediately after receiving my diagnosis of rheumatoid arthritis years before, grew to the point where I actually started to think that they best way out was, indeed, to end my life.

Needless to say, once I reached this point, I was frightened beyond belief. (Luckily, I was also frightened enough to ask for help.)

And earlier today, as I looked back at this period of time in my life, a time that was so marked with different emotions associated with thinking that my life was nearing some “end,” I couldn’t help but smile now that I am able to see that, in so many ways, it was only just the beginning…

The beginning of embracing and accepting my pain, and not wishing that it would just magically go away.

The beginning of sharing, with my head held up high, the challenges that I face on a continual basis, and no longer hanging my head in silent shame.

The beginning of re-defining what “success” means, and realizing that it has nothing to do with what others think, and has absolutely everything to do with what I think. (And loving the feelings of success that nowadays often accompany seemingly “simple” tasks such as getting out of bed, taking a bath, getting dressed, preparing a meal, etc.)

The beginning of transforming my physical limitations not into reasons why I should berate, criticize, and attack myself…but instead into lessons on how I can be more kind, gentle, and supportive of myself.

The beginning of finally understanding that asking for help makes me strong, and not weak.

The beginning of reminding myself, every time I started to get angry that someone else didn’t understand my disease, that my energy and thoughts were better spent on myself trying to learn something new about my life with chronic illness, something which would allow me to cope even better with the pain and disability.

The beginning of a new awareness that I can happier that I could have ever previously imagined, despite the fact that I have to deal with pain and disability, each and every second of the day…and the genuine hope that continues to carry me forward, which results from knowing that this happiness is more real than anything I’ve ever known before.

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

Comments 11

  1. Barbara Storey

    I cannot believe this, but I was also just now thinking about my chronic illness and how my life has changed and how my awareness of those changes is something I am growing into. Thank you so much for writing and posting this – it was very affirming for me to read it just at this moment. 🙂

  2. Joseph

    Where you speak of the slope down into deep and dark depression rang a bell with me. Think I’ve been going through similar feeling this year, had dark times for years now but it can really get to you… The pain and pure frustration.

    Happy to read that you pulled through it, asking for help is the difficult part I think.

  3. Carolan Ivey

    Dx’ed at a ge 5, I literally don’t remember what it’s like not to have RA, but I can say I’ve been through all those stages you’ve been though. It’s a grieving process, and we WILL go through each stage, either willingly, or kicking and screaming. I really didn’t start my grieving process until well into my 20s, when it dawned on me that the doctors were wrong – I was never going to “grow out of it.” It took me a long, long time to work through the resulting anger. I probably should have gotten counseling, but like most of us, I looked at asking for help like admitting defeat. Suffice to say that I’m incredibly lucky I’m still married, and that my friends and family are still speaking to me. 🙂

  4. Robin

    Thanks for this wonderful post. I’m trying to get better at walking away from anger and frustration and walking towards acceptance and understanding. It’s a difficult road. But hey, admitting you have a problem is the first step right….

  5. Jerry

    I’ve found that if I morn what I used to be or worry about what is to come I open the door to the darkness. I try to live for today, one day at a time. I make a plan for that day and try to follow it as best I can. If I don’t get it all done then there’s always tomorrow. I don’t fret over the things I didn’t get done I rejoice at the things I accomplished! Have a safe trip home!

  6. Suzanne Robertson

    Thank You! What an amazing blog post this is following a week of walking everywhere in NYC and DC, wearing myself to depletion–and feeling guilty that I was sick by the end of each day! As I nervously sit for my first Actemra infusion, reading your words are irreplaceable. Thank You for your heartfelt words and the timing of this post! 🙂 Wishing you well on your journey home!

  7. Irma

    I can relate to your struggle. I always felt that I had developed this disease too young. And here it was at a time when I was way older than you are now! Everything is relative, as they say. We do have to keep a positive attitude and not let RA win. We have RA, RA does not have us.

  8. Kris T

    Thank you. As someone living in denial for a long time, you inspire me to keep going in a positive direction as I learn to live with RA. I am grateful to have found your blog. All the best.

  9. Amanda

    It’s really nice to know that I’m not the only one that had a depression period after hearing my diagnosis. I was fifteen, the start of my sophomore year in high school, when I found out I had RA. High school is already tough but having to deal with a disability made it worse. Even now in college I still have a hard time but it’s the moments that I succeed that make me stronger.

  10. Kelly Tirman

    I am sending my stepmother to your blog. She doesn’t comment much but I am sure she will be reading you daily. I think it will help her a lot. Her name is Fran. BTW – she speaks Spanish and I think you will like her.

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