I had an interesting conversation yesterday with a new member of my local FibroHaven support group. Like so many who are learning to come to terms with their diagnosis, she is struggling with her current state of being. Repeatedly throughout our conversation she stated “I can’t accept… (fill in the life changing aspect of chronic illness here).” Sitting before me was a former athlete and high-level executive who had the rewarding life she worked hard to create stripped away when she crashed with chronic illness. Everything she had once identified herself by is gone, and what is left is a semblance she does not like or accept. Sound familiar?
How often have we struggled with our new reality?
How often have we grown weary and frustrated with trying to decide who we are and how we now matter?
How often have we wondered if it will ever get better?
For many years I ignored and hid my struggles. My symptoms were moderate enough for me to do so, and the only person who really knew my reality was my husband. But then my crash came and the days of pretending were over. I was faced with having to accept a version of myself that I thought was weaker, useless, less than. It took me a long time (and it is something I continuously work on) to determine that I still matter – that I can still have a purpose. I may never have the freedom again that comes with perfect health, but that does not mean I cannot have a meaningful and inspiring life. My mind still reflects back to the “healthy” me, and there are days I long to be her, but I have found a sense of value and purpose in the chronically ill me. I am whole, despite all that is missing. And truthfully, I like the new me more than I ever did the active and successful (and high strung and stressed out) former me.
Now how do I share my personal epiphany and encourage my new member without sounding preachy or all-knowing? Because if you read my blog regularly, you know I do not have all the answers. I am a work in progress, and I do a lot of my work in a very public way by sharing it here.
My message to my new member was this: Until you learn to let go of who you were, and accept who you currently are, you will not be able to move forward. You will be stuck trying to get back to a “you” your body is no longer capable of being. By continually looking back, you are fostering frustration and anger rather than acceptance and possibility. Examine who you are now, come to terms with it, and then make a plan to move forward.
Accepting where you currently are is not the same as accepting you will always be in this state. It is simply the first step in readying yourself to move forward. You need to be aware and honest with yourself so you can focus on doing the things that are within your ability that will help you move forward. Let go of what you used to be able to do, and work within your current capabilities. And it is work. But you can improve. You can get better. But only by letting go, and working to move forward.
We all have interests and desires and passions. Some we have had to let go and can be no more to us than comforting memories of the past. But others are still attainable and aid us in moving forward. For me, it is my writing. Some days my brain and body will not cooperate so I don’t even try. There are days when it is too miserable to sit at my computer, but my brain is active and swirling with great writing ideas. Now if I were totally together and on top of things, I would make myself comfortable on those days and use an audio recorder to capture the words running through my brain. But do I? No – not yet. I am a work in progress.
But here is the thing, by accepting where I am, I have opened the door and stepped out onto the path towards improvement and growth. I do not know exactly where I am going, I just know I refuse to stay still. Each day I carve out a new piece of my path. Somedays I make great progress, others I just kick some dirt around and examine the scenery. But the one thing I will never do on my path is just lay down and let the weeds grow over me. I like myself way too much to do that, and I am too excited to see where my road is leading.
This was a hard lesson for me to learn, too. I used to do a lot of music – singing, instrumental, whatever – performing quite often. When the fibromyalgia jumped up and slapped me, I ended up not being able to do it at all.
It was difficult for me to accept this, and the process of coming to accept it was basically one of grief – I had lost not a loved one, but a huge piece of my identity. Until I came to terms with that “death” (as it were), I couldn’t move forward and recreate myself according to my new limitations.
One of the things that I needed to do, for my own personal progression, was to accept that this new state was permanent. I know that it may not be, and I am on an upward swing right now, but that was what I had to do to fully let go of my old capabilities.
Matt you are absolutely right. It is a grieving process and there are so many emotions and stages of emotions that go into letting go. What a beautiful gift you were forced to let go of. I hope you have found a way to still find comfort and joy in music. I can tell by your writing that you are a creative, soulful person. You have a lot to work with in the recreation process! My best to you.
Huh, this might make you laugh but I can’t tell you how many fat camps I’ve been to that said essentially the same thing: gotta love yourself as you are or you will never change. Didn’t make any sense to me. You make it more understandable! Still…sooo hard to do!
This is such a hard thing to realize but acceptence is really the first step. It is such a big step though that it has taken me many years to get to this point. Great blog!!!
Erin it has taken me many years too. And I am sure like me, somedays you are better at it than others, but good for you for working so diligently to get to where you are. It is funny that you say how hard it is. I had lunch with a friend this week and we talked about how frequently we say “this is hard,” or “that is hard.” I think each of us did it several times. I once had a very wise woman suggest to me that I consider my language, and the power of my words. I was talking to her about how hard writing is for me some days. She invited me to change my language about writing – change “it is hard” to “I am capable of…” (fill in the blank with whatever it is you are finding hard). It really is a powerful exercise and changes your brain and the way you think. And yes, even though I know this and put it to the test regularly, I still find myself saying “it is hard.” But I am capable of one day never again saying “it is hard.” 🙂
Well Kathy, you always make me laugh, but then that is your gift! I am not surprised to learn that what I shared is a universal message of sorts. You do not need to be chronically ill to benefit from learning to let go and love yourself. It makes sense to me. I am glad I made it more understandable. Now if only I could put a mirror in front of everyone and help them to really see all there is to love…
Wow, so very powerful. Just recently found this site, and am so relieved to read peoples thoughts that relate so closely to my feelings/emotions. I am 41, and my 71 year old mother has waaaaaay more energy and strength than I do. Learning to come to terms w/this and many other issues.
Glad you found us Stacie! One of the main reasons I write here and facilitate a local support group is to create community so we can come to understand that we are not alone, and that what we are experiencing and feeling is real. Nothing gives me more satisfaction than to read a comment like yours and to know you found relief in knowing what you feel is shared by others. I think understanding that can aid us greatly in our acceptance and letting go process. Keep working to come to terms with it. You are worth the effort!
We all have our personal journey don’t we? I am so glad I have accepted my life with FM/CF. I always feel bad for those who are just starting their journey, when it feels like the end of their lives. Thanks for posting as it is always nice to read a positive, informative post. Well done. 😀
You are so right Deb, and for those just learning to cope, it is so important to reinforce to them that there is hope. They may not always believe it or be able to see it right away, so it is a message I try to repeat often.
This was a very difficult lesson to learn for me, and even now I feel myself slipping back to hold onto the old me at times. I think your message to your new member was perfect!
I understand Nancy. I think we all struggle with it. Acceptance is a practice, much like meditation and yoga. Somedays you will be more successful at it than others. Be kind to yourself. Allow yourself to feel what you are feeling, and then move past it. I think that is a very important part of acceptance – acknowledging how you are feeling without giving in to it and making it your reality. We are not static beings. We are fluid and our emotions fluctuate. Just never lose sight of how valuable you are.
Thank you for this post. I do not have FM, but I am trying to learn more about it, as a loved one is suffering from this illness.
I think in my mind, I kept thinking she’ll get better if she only did this, or that. But I need to come to an acceptance of who she is now, and forget the past and just accept it.
Thank you!
Debbie I really want to celebrate you and your comment for several reasons.
First – you are a caring and loving soul to take the time to research FM in an effort to help and understand your loved one better. What a blessing you are! It is often so hard for us to explain what we are experiencing, and even harder for someone not going through it to understand. It really warms my heart to know you are making the effort.
Second – I have spent a lot of time working on my self-acceptance and letting go of the person I once was, but I never took the time to realize that my loved ones needed to go through it too in order to lovingly accept who I am in this moment. I feel very selfish for not having considered this, so thank you for making me think about things from their perspective for a change.
Thank you for taking the time to leave a comment. I am so happy my post helped you, and you in turn helped me. Moments like this are exactly why I write this blog!
I think that is the truth in everyday life and can be applied to anything. It is good to realize that it can make things easier to deal with. In my search for information about fibromyalgia, I found a great place to help anyone take a little control back. It compares fibro with chronic fatigue and also talks about fibromyalgia symptoms.
I LOVE your blog! I’m sooo glad to have found you. This post really meant a lot to me. I have gotten to a place where I generally accept the new me and try to avoid looking back. But it’s also a good refresher, like in reading posts like this, to remember to keep pushing forward, and to have a reminder of some ways to do that. I know a lot of people can be helped by reading this post, so I hope you don’t mind, I linked to it from my blog. I hope & pray that everyone with Fibro can eventually get to this place of acceptance and moving forward!
Thanks again!
What an excellent way to start my day! Thank you for the comment and your kind words Rochelle. There are days when I need to be reminded that what I am doing matters, so thank you for reminding me. I look forward to getting to know you better by reading your blog. I love how many wonderful people I meet through the blogosphere! Thanks Rochelle! I appreciate you.
Just, thank you. I have been out of touch with my fibro world for too long and just reading this helped. I need to reconnect with others who share this with me. I used to read here all the time and I am going to start back up. Thank you again.
Welcome back Brig, and you are very welcome! I am glad you are at the point again where you are looking to reconnect with the FM community. It is so important to know that others share and understand your struggles. Please know how honored I am that this is a space you have been to and felt compelled to return to. Thank you for inspiring me too!
I was diagnosed with fibromyalgia a year ago. Basically in my mind, I have not accepted it and as I said to my doctor, I don’t have time for fibromyalgia so it can take a hike! I put it on the back burner and forge on through pain until I get to the other side to achieve what I still want to do and used to do. I still work full time although struggle to get moving in the morning, and I come home, do all my housework and then ride both my horses. I guess I will either accept at some point or crash, I must still be in the angry stages!!!
Angie, the same determination you use to put FM on the back burner, you could apply to making small changes to make sure you never crash. You have such a full life, just make sure you find the time to nurture YOU. Without knowing any specifics I can only say in general terms, sometimes FM is our bodies way of saying “slow down.” And you are right, we do go through many stages to reach acceptance. It is a grieving process of sorts. I wish you nothing but the best and hope that you never have to face the life-altering crash.