Earlier today I was thinking back to life before chronic illness. How I feel now versus how I felt then. Now I’m not talking about physically. It’s easy to focus on the physical differences between now and then and the things that I could do then than I cannot do now such as running or climbing.
I’m talking about how I feel on the inside. My confidence. My sass. My spunk.
Sadly, I think a lot of that has gone. Granted, I’ve admitted I’ve always been quiet and introverted but still there was a spark. I know there was. I felt it.
It wasn’t about beauty or attractiveness on any type of physical level. It was about feeling comfortable in my skin and how I was and feeling like I could own that.
I think over the last few years the physical drain of the illness is in itself has obviously been a pretty significant part of it but I think there are so many times where I just feel so defeated and almost betrayed by my body so its hard to feel comfort in my own skin when I feel it has almost turned against me. My body itself has changed. I have struggled with my weight since coming ill and even when I feel successful in my weight loss journey, my shape has changed so I’m curvier in some places than In once was. My new scar as also been a big struggle. It’s very large and very dark (and still really, really hurts). I struggle with even my husband seeing it and it only adds to the intimacy issues related to my illness.
Above the physical things that impact my lack of confidence, I worry that somehow my worth as a person is not what it once was. Who wants to be friends with someone how spends a great deal of time bed-bound? Where is the fun in that? I constantly worry that other people do not believe that I am truly sick and its all in my head. I’m a minister’s wife and am not able to be nearly as active at church as I’d like to be so I worry what church members think when John shows up to church alone with Abby week after week.
This all of course also impacts my spiritual life. I have a stack on devotionals on my night stand that I really want to read and dig into but I cannot seem to do it. Every evening as I crawl into bed I look at them and feel a pang of emptiness inside. I miss the intimacy I once had in my walk with God. I miss the craving I used to have when I skipped reading.
All in all, I feel like a shell of who I once was. I miss feeling like me. I’ve written post after post on trying to let go of the “old me” and learn to embrace and find a way enjoy this new normal (after all it is the title of my blog) but I’m in a season of struggling. I’m in a stage of grief where I bounce between anger and depression and I hate it. I’m ready to move on.
When I wrote my senior will in high school, I remember my opening sentence was, “I, Jamee, being of strong mind and vivacious body . . .” I want to feel that way again. I want my spunk and sass. Sure, its been 13 years since I wrote those words buts it’s never too late to reclaim it, right?
The thing I love the most about Invisible Illness Week is being able to read the words of others and know that I am not alone. I know the journey I am on is familiar to others who have been diagnosed. I hate knowing that others struggle with pain and illness on a daily basis (and feel the anger and depression of losing a part of themselves) but knowing that I am not alone is such a reassuring feeling. One of the seminars I am looking forward to the most is called “Who Am I Now? After The Diagnosis” and hoping it will help get me started on regaining my footing. I am also hoping working on my Sharing Our Spoons goals will help too!
Have you struggled with your identity after your diagnosis? What have you found the most helpful?
I am writing this week for Invisible Illness Awareness Week! Don’t forget to enter a chance to win Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend by Lisa Copen!
Counseling helped me the most after my diagnosis. My doctor actually recommended it. It’s a huge change to deal with multiple dr visits, medications, and loss of energy among other things. It just helped me gain perspective. I highly recommend it to anyone dealing with chronic illness.
I definitely think its time to go back. I just hate the one I really liked and trusted isn’t seeing patients anymore 🙁
This post speaks directly to me Jamee. You voice all of my fears, worries and doubts. I was just sitting here wishing for my “old” life and the old lighter version of myself. I’ve been struggling with anger and depression for a while and I’ve reached my breaking point. Its time to get help. Thank you so much for your candid honesty and your strength to share every part of your journey. Here’s hoping all who suffer from invisible illness find their inner strength. Xoxo
I’ve done counseling before when we were in the midst of infertility and before my hyst but I’ve just been putting it off thinking I could get it together once I was over the initial part of my recovery but just can’t seem to pull it together. Thankfully I see my dr on Tuesday and I’m going to talk to her about it!
This was such a beautiful post. I struggle with my identity especially with all the changes in my life due to my migraines. Thank you for your honest post.
Thank you Melissa! It was difficult to write but I am glad it was able to help others who may be struggling with the same thing!
Thank you for such an honest post, Jamee. I think all of us who deal with chronic pain illnesses on a daily basis eventually lose the part of ourselves that is fun and spunky. I know I did. I have been blessed by a very understanding and patient hubby, but he didn’t know me way back when I was “normal.” I often tell him I wish he had because then he could see the huge difference!
It’s all right to mourn what used to be but I’m slowly learning how to accept who I am now. I have also felt huge guilt at having to cancel dates and dinners out, not to mention getting together with friends. We used to go lots of places on our motorcycle, but the summer heat really does me in, so I rarely go riding with him now. It’s like the window onto my world is slowly closing in, smaller and smaller. I’m sure you know what I mean.
I am very thankful also for my close friends who have their own health issues and understand my need to cancel things at the last minute. That makes up for the few who don’t (or won’t) understand…
Blessings to all of us who are struggling with such issues. My prayer is that we all just hang on tight to Jesus. He who was so unaccepted and thought odd while on earth understands exactly how we feel.
~Anna
This was beautiful. I’m so sorry that you have struggled with so many health issues. My husband has debilitating, chronic migraines. When you look at him you can’t see a physical reason why he’s in pain and most of the time people don’t realize how much pain he is in.
Silent illnesses are hard for “healthy” people to understand.
Thinking of you in your battle and praying you will find your sass again. <3
Amazing post Jamee. You have described exactly how I’ve been feeling well. I too have lost my confidence, and I’m really struggling to get it back. I’ve put on weight due to new medication and I have ugly stretch marks that I hate.
I struggle socialising and I fear that people will just think I’m boring, as I only work 3 hours a week and can’t do much else. They say that your job doesn’t define you, but it really does when it comes to the question “so what do you do”. I never know what to answer with, and I don’t want to have to tell everyone that I have a chronic illness either.
I have a whole heap of devotionals I want to read too. I used to journal prayers often as well. For the last two years I’ve hardly gone to church, and I feel really guilty that I don’t enjoy these things as much anymore. A scripture that has really helped me during this time is Psalm 46:10 – Be still and know that I am God. When I’m not feeling well enough, just resting and knowing that God loves me is enough.
I hope that made sense, I am really struggling with brain fog today.
I am so glad I found your blog, you have been such a great encouragement and blessing to me. ♥
Ps. I think you’re pretty sassy!
I am so glad we found each other too! The community of support I have found through blogging has kept me going!
As someone who was always really driven, I had huge trouble adjusting to being sick, particularly at first. I always felt like I should be doing more, even though I really couldn’t. I’ve had to let go of a lot of that, but I think I gained some good in terms of wisdom that I couldn’t have claimed when I was well. I’d like to think it balances out.
I hope you have good luck in your quest to reclaim yourself!
Thank you for your honesty. It means so much as I struggle with endo, infertility, and the interminable waiting that is the adoption process. Even to those who have been most supportive, it’s hard to admit when you have days when you’re just down and grieving for the you that used to be. I know I have lots of days where I step back and say, “Lord, is this really my life, or am I just having a really long dream?” Thanks too for not ending this post with “But everything will be okay soon, I just have faith.” I feel like that’s what everyone expects me to say, and sometimes I just go ahead and say it to make them happy, but it’s not real. I do have faith that God has a plan for me in all this, but it isn’t the same plan as that of my friends who are mostly healthy and who get pregnant and carry to term without even trying, and I’m learning that it’s okay to acknowledge that. It’s a slow process, but bloggers like you are a big help.