Chronic illness is a life-changing experience for everyone, and each person’s journey is very different; but there are experiences we all recognize as well. How many of us have lost jobs, friends, spouses, homes, and family members to our disease? No matter what illness we have, we share so much that we can connect on a level that many will never understand unless the journey comes to them. We share symptoms, and losses, and lessons; and we share the understanding that our lives will never be the same because the illness, the journey, has changed us in ways that can never be undone. Even if we were to wake up tomorrow and be healthy again, even if by some miracle we were cured; the experience has changed us in fundamental ways, and the lessons it has taught us can never be unlearned.
My journey began many years ago, and it has changed my life so much that when I look back I barely recognize the woman I was. I was married, and miserable, and convinced that I was too stupid to ever be able to take care of myself without a man to tell me what I thought, what I wanted, and what I felt. I was depressed and suicidal, dissociative, and having flashbacks that I thought were delusions or hallucinations. I was terrified that I was losing my mind, and more terrified to tell anyone what was happening for fear that I really WAS “going crazy.”
I can pinpoint the exact moment that my journey through illness began, too. Not with a time or a date, but with an event; an event so ordinary, so innocuous, that I could never have suspected the effect it would have on my life. I was at the zoo, and I picked up some literature from an information table. It was a pamphlet about child abuse that I stuffed into my purse and forgot about. How could I have known that I had taken the first step of a long and painful journey on that day? If I had known what would happen, would I have thrown the pamphlet away without reading it when I found it in my purse? I don’t know, but I DO know that the information I found both saved and destroyed me. It saved my life, but it destroyed the person I was. It created who I am now, and I’m more grateful for that than I can ever express.
That simple trifold taught me that my “ordinary” childhood had in fact been abusive, and led me to a therapy group where I learned the difference between love and abuse. The women in the group helped me learn so much about myself that I can never fully repay them. That therapy group was the beginning of a long journey, full of losses and gains, pain and joy. It led me to my first diagnosis of many, it led me to leave an abusive marriage and it led me to return to school.
So much has happened in the 20 years since I started this journey – I lost a marriage and a home, I gained and lost a career and my own place, I lost my credit, my health, my family, and much more; but in return I have gained a loving, supportive husband and wonderful friends; and I’ve found myself . . . All in all, I think it was a good trade.
If I’d known where the first step would lead, would I have taken it? I don’t know. What I do know is that as painful as it has been, as many things as I’ve lost; I wouldn’t change it, I wouldn’t go back to who and what I was for anything in the world.
For my husband, who I love with all my heart; for the friends I’ve found in my journey, both online and off; and for the therapists and women in that first therapy group; I will be forever grateful. Thank you all.
Thanks Wendy for sharing your story. I’ve shared parts of mine on my blog too. I’ve often thought that there is a connection between childhood traumas, abuse, dysfunction, etc. and FM, even if medicine /research/ “science” can’t establish one.
I agree that there is probably some kind of link. It’s just too common a connection for there to be nothing there, especially when you start including the people who weren’t abused but did have some other type of trauma in their childhood.
Wendy,
You have a really heart-breaking story, but it sounds to me like you’re on your way back to health; thanks to a lot of love and support, as well as new understanding on your part.
I think understanding that connection may be the key–I really believe that we create our own lives based on our perceptions of the world. And when you grow up in an abusive situation, your perception is often skewed by the abuse you suffered–you might feel that you’re “not good enough” or that you “don’t deserve better” or even that you “deserve to be sick.”
Good for you for seeing the connection and finding new ways to feel healthy and whole.
Angie
Angie -
I don’t know about “on my way back to health” but I do know I’m on my way to living the life I WANT to live, in spite of my health issues. I would love to be well again, but even if it never happens and I spend the rest of my life dealing with medical issues, they won’t define me or my life, they’ll just be a part of both. I’ve found that life itself doesn’t have to be painful; even when you are in pain, you can STILL have a good life. The biggest thing that chronic illness has taught me is what is really important in my life: good friends, a wonderful husband, and the ability to continue learning.
I agree that we “create” our own lives, in that if we “believe” our life is horrible, it will be. We are not only what we eat, but what we think as well. If we think that we “can’t” do something, we won’t be able to; not because we don’t have the ability, but because we won’t try. One of my favorite quotes is: “If you think you can do it, or you think you can’t do it, You are right.” Henry Ford
Wendy, thanks so much for taking time to comment on Jason’s blog at http://bit.ly/cE2Eoc! You made me look good
Thank too for telling your story with such honesty. In the 90s, I suffered through a ten-year abusive marriage and only by the grace of God got myself and my children out of there. That abuse led to a rare physical illness for which I have been on medication for twenty years. Fibromyaglia is a subset of this condition. I am delighted to find your website and can’t wait to tell my assistant, Tina, who suffers from CP and Crohn’s and is in almost constant pain. She has a blog as well at http://www.livingcerebralpalsy.com.
You are providing an invaluable service to us all. Thank you.
Victoria
You’re very welcome Victoria, and thank YOU for the comment. It tells me that I’m succeeding in my desire to provide support, information, and validation to others who suffer with chronic illnesses, and I really appreciate that. I also appreciate your willingness to share a part of your own experience, since knowing we are not alone in our struggles is the best validation there is.
Hi Wendy,
I found your blog through Annie. I suffer from severe CFS?ME and have for nine years. Thanks for writing your story. If you go to my website, you can see mine. What struck me was your comment that when you look back at that life before you got sick, you barely recognize the woman you were. I have the same experience. I sometimes feel as if that life happened to someone else.
Take good care and it’s nice to meet you.
Exactly! That person from “before” is someone I don’t even know any more, and that life was a dream (not necessarily a good dream, but a dream nonetheless.)
Welcome to my world . . .Annie’s great, I love her site, and I’ve found several good sites through her. Let me know when you start doing the book launch and I’ll do a post on it – just from what else you say on your site, it’s obviously desperately needed information, and although I’m not a Buddhist I’ve found much in Buddhism that is helpful in surviving chronic illness.
Thanks Wendy. I so appreciate your offer to do a post. The Buddhist practices in the book are non-parochial, meaning they’re not religious. (I don’t think of Buddhism as a religion but as a practical life path). I’ve put your blog in my Google Reader and look forward to more posts. Take good care.