Which Life is Better?

I just read an article about a boy who was diagnosed with juvenile idiopathic arthritis at 13 months.  Yes, months.  This is, of course, after they did test after test, hospital stays, and waited 6 months to see a rheumatologist. The long and short of what I’m saying here is that this boy has been in chronic pain all of his life. My first thought was absolute sympathy, I can’t imagine being in chronic pain from day one. Never knowing what it is like to be normal, to have no pain, to use your body as a tool instead of knowing it as a prison. How terrible!

Then I thought about it a little more. Most people who end up in chronic pain after childhood spend a lot of time grieving for the life they lost. The one where they could run and jump, work and play, all the while never considering their health. In my experience looking back on that life, that person, is one of the most painful parts of this disease. Missing that life is just as profound as the pain itself. So I have to wonder…would it be better to have never known those days? Or was it a gift to have that life, not matter how brief?

I’m completely torn…what do you think?

question

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in chronic fatigue syndrome, Chronic Pain, conditions and diseases, coping, depression, Doctors, fibromyalgia, health and tagged , , , . Bookmark the permalink.

11 Responses to Which Life is Better?

  1. Billie Garrow says:

    I had to think about this quite a bit and I still don’t have a definitive answer. Helen Keller immediately came to mind. She had such a difficult start to life but due to an amazing teacher, she lived a full abd happy life. She was aware of what she was missing but she didn’t let that keep her down. Would she rather have been born with sight and hearing? Probably. Pain is obviously not the same but I wonder if memories of the past, and being pain free, might be better than not ever knowing what being pain-free was like.

  2. Kate Fuller says:

    I am glad I had a life before without chronic pain & for me it was a long one. I’m almost 64, was diagnosed 3 years ago but know I’ve had Fibro for 10 years. I do grieve for my former life but still find joy in my current one. It’s like that old saying “It’s better to have loved & lost than never to have loved at all”. My heart goes out to the baby boy & his family. I hope medical professionals have a treatment plan to keep him as comfortable as possible.

  3. Gosh, I just can’t say, don’t know. I only know about what’s true for me and that is that i am so grateful that i had 60 years of good health. some younger painees i’ve talked to seem pretty resentful about the health they didn’t get or have, and it’s certainly understandable. i guess we each have our own road. one thing i do know is — it’s not good to ever judge another person’s road. and everyone handles things in their own unique way. i was lucky to have so many years without pain or illness, very lucky.

  4. charley says:

    Personally both are equally torturous. Even though I’m 61 I have had a lot of painful periods (literally). I now appreciate the good times that I did have but illness has prevented me from having the life I could have had. I try not to get caught up in the comparisons game that has gotten me into trouble trying to explain to a friend with cancer that my life is equally as devastating. I mean no disrespect to anyone who suffers with cancer or any other condition. Our pain is deeply personal and none of us can never know what another suffers.

  5. I can only speak from personal experience….I was born with the aftermath of a fetal aneurysm that made me legally blind in one eye and with a jacked pituitary gland that gave me a form of dwarfism. I was in a car accident when I was 13 that gave me a mild brain injury, another car accident at almost 18 that gave me chronic back pain, then broke a vertebra at 27 that eventually led to nerve (& spinal cord) damage and a spine fusion at 32. Add in the lifelong impact of the birth defect stuff and it gets messy, but that’s the briefest history I can give 🙂

    I don’t mourn the vision I never had, although it did cause a lot of frustrations growing up. I mourn for the intellectual/mental capabilities I lost in the brain injury although since it happened over half my life ago I don’t have a lot of solid memories of “before-me” to compare. The spine fracture & chronic pain that I’ve inherited from everything has made me mourn much more fiercely than anything from birth or childhood…..maybe that’s more of a function of already having limitations then adding more on top of them though?

  6. Couch Lady says:

    I try to make up for it now! I had chronic pain as a child, though I did not know it! I was never taken to a Doctor! I was beaten regularly and starved! I remember staying up all night in pain! My legs hurt so bad! I also remember my Mother’s rages and living in constant fear! My Mother was a Borderline, so she would do 3AM rages on school nights! In Foster care it wasn’t ideal, but at least I did not have to deal with that! Around when I turned 40 my body gave out! I was misdiagnosed, repeatedly and told my pain was all in my head! I have now had 2 surgeries on my back. I found out a couple of Years ago that my Coccyx was broken, it happened in Childhood! I was also told that was in my head. I even had Neurologist lie to me about it!
    So now I try to re parent myself on days I feel OK enough to get out! I try to take care of myself and even indulge myself when I can! Now that I think my head is in a healthy place, my Body has given out! I try not to dwell on the stuff I cant do! I tell myself that that I have been through has made me stronger and more compassionate!

  7. Wordgirl says:

    I have had CRPS for six years. It started and remains on the bottom of my right foot. Unfortunately it has spread everywhere. Looking back at “before” I wouldn’t give up those times for eight kajillion dollars. I was a really good mom and we did everything. I used to front and back flip from the high dock springboard thinking if I did it every year I’d never be afraid. The year I front flipped off the high dive was our last year at our favorite beach. Now I can’t walk on sand. But I have those memories. My daughter learned to swim there. We went fishing there. Now I lie in bed in pain every second of my day. But I can look back and smile knowing I had a great job, was active in church, swam a mile four days a week, rode bikes with my husband and daughter, did the MS150 twice, and so much more. Maybe those memories piss me off, too, since I know how much I’ve lost. My near photographic memory is gone for sure — that pisses me off. You’ve raised a tough question but I’d say I want my memories. Great question.

  8. Sylvia says:

    After a great deal of thought, I must agree with the majority here. I had about 50 years of good health – with a few minor blips – and I certainly can’t imagine having never known that joy of a painless life. Everyone has aches and pains during their life but knowing it is a passing thing makes it bearable. To be born already in chronic pain is unconscionable. This poor child has little joy or happiness to look forward to. His parents must also feel so helpless knowing the pain he is enduring and being unable to help him. I can only hope the medical profession work hard on this problem to try and find a cure, or at least great pain relief for this child. My thoughts and prayers are with this entire family.

  9. leitis23 says:

    It is a really tough question. Most of us had a life before chronic pain and the idea of letting go of that life, those memories, is pretty terrifying. I had to think about it for a few days. Here is what I came up with:

    I think that the answer to this question may be greatly affected by age. If I had lived a normal life for 60 or maybe even 40 years, this would be a clear cut answer. I lived a mostly good life and while life now with chronic pain isn’t a ton of fun I have the majority of a normal life to look back on. For me, however, this was not the case. My life took a fast hard turn when I was 28. I had lived and studied all over the world. I had two degrees and a great job. All of my life I was extremely active and adventurous, my life wasn’t perfect, but I always persevered, grew, and learned. I would even go so far as to say I was fearless, skydiving, white water rafting, black water rafting, rock climbing, cliff jumping, abseiling, even zorbing. Then everything stopped. I tried to keep my job, but mostly ended up on medical leave and was eventually laid off, which led to loosing my home and on and on. I think because I was taken down in what I feel was the prime of my life, where all of my hard work was just beginning to pay off, that I feel particularly robbed. Of course, sitting here I wouldn’t want to lose those memories even though they also cause pain. However, if I had the option of never knowing any different, I think I would take it. Those born blind don’t miss seeing because they never knew it. They adjust better than those who lose sight later in life. Additionally kids are resilient and a lot stronger than we tend to give them credit for. This kid may never know life without pain and that is a terrible thing, but he will be much better at finding joy within the confines of chronic pain. He will have skills that we never will. His life won’t be broken into “before” and “after” it will just be his life. His parents fought the battle of getting doctors to believe that he was sick and in pain so he will never wonder if he is crazy. Between being taken out of my prime and going to being bedridden and never knowing anything different, I would take the latter.

  10. Peter says:

    I think I would rather remember and grieve than to always look at others and spend my life wondering what others are so excited about.

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