Last Updated on April 27, 2021 by Lori Geurin
As you may know, May is both Lyme Awareness and Mental Health Awareness month. I recently became aware of something I want to address. Lately, I’ve been having more conversations with people who have Lyme and other chronic illnesses. And I’ve noticed that shame is a common theme for people whether they realize it or not. I see more now that it’s been an issue for me too. Let me explain.
My Experience With Shame And Untreated Lyme
Before my life was forever changed by untreated Lyme disease, I was a healthy, energetic young woman – a wife and mom of 4 children. I loved being active and spending as much time as possible outdoors.
After Lyme, my quality of life went downhill fast. After two years of living with untreated Lyme and co-infections, I felt like I was residing in someone else’s body. I had unrelenting pain, heart problems, nausea, air hunger, debilitating fatigue, migraines, and autoimmunity issues out the wazoo (to name a few).
When the doctors figured out why I was so sick, I barely had enough energy to sit up in bed. And that’s where I spent most of my time – definitely not by choice. Over the course of a few months, my life did a total 180.
The problem was my mind could not comprehend the new me. Not like this. I resisted accepting this new way of being and I fought it hard. When you have an *invisible illness* it can make the struggle even more difficult because you may not look unwell on the outside.
An Invisible Illness And Shame
Plus, when you have doctors telling you things such as, “you can’t get Lyme in Missouri” or, “You look stressed. You simply need to watch this walking video and start walking and you’ll feel better” (Yes, this actually happened).
Yet your health is deteriorating so fast that you feel like you’re dying. But you haven’t met anyone else who is going through what you’re going through so you start questioning everything.
And you’re losing hope because the doctors, who are supposed to know how to help you don’t have a clue what’s wrong or what to do.
It’s a scary place to be.
Can you relate to this scenario?
Now when I talk to other people who are going through similar experiences I see things I didn’t before. I realize now that I felt a great deal of shame about being chronically ill.
Keep reading to learn if this is a common thing or if I’m just a weirdo. Also, get ready for some Brene Brown quotes because she has some enlightening things to say about shame. And, hey, she is a shame researcher. Enough said. 😉
Job Loss And Shame
So, let’s take a look at an everyday scenario. What do people ask each other when they meet for the first time?
“What do YOU DO?“
Well, when you have a chronic illness this makes you stop and think. This question became a reminder to me that I’d quit my full-time teaching job because of my health.
I didn’t realize how often people asked this question until I was no longer sure how to answer it.
But you know what I’ve realized? You are not what you do. As cheesy as it may sound, it’s who you are on the inside that matters. So many of our identities are tied up with our careers and jobs. I’m much more aware of this now than in the past.
Even the life I had at home with my family had completely changed. I was grieving my past healthy life. I was no longer able to cook meals and clean the house as I had before. Although my husband David works a demanding job as a high school principal he started picking up the slack for me because I couldn’t do much of what I’d done in the past.
The dynamics of our family changed because our 4 children still had needs that had to be met even though I was bedridden. For several months, when I was the most critically ill, it seemed like the *only thing* I could still do as their Mama was to give them gentle hugs and tell them that I loved them.
Looking back now, why did I ever think that this wasn’t enough? Isn’t loving your children the most important thing?
But such is the lie of shame.
I was so concerned that my lack of ability to be on my feet 24/7 and cook them home-cooked meals and drive them everywhere was going to scar them for life….I’m here to tell you that it hasn’t! God has blessed us beyond what I ever could have imagined and our children are now 22, 20, 18, and 15 and doing very well.
For Better Or Worse
Driving was painful and difficult so David helped take the children to their activities whenever possible. I’m appreciative of the loving care and support he showed me. I know seeing me go through all this was hard on him too. “For better or worse” came much earlier in our marriage than I’d ever anticipated.
I felt shame that I wasn’t teaching anymore and unable to be the wife and mom I wanted to be. It was frustrating not to be able to do what I believed I “should” be doing in life. The last thing I wanted to be was a burden.
And I felt shame because my doctor told me that I was “just stressed” and needed to start walking and this would help. And when I tried and I couldn’t even physically make it to the mailbox I felt like a failure,
but I also knew I had to fire my doctor because he didn’t believe me when I told him how sick I felt and he wasn’t helping me get the answers I needed.
Sometimes, pain brings clarity. And answers.
And eventually peace and healing. It just may not come in the way we expected.
At this point, you may be surprised to learn that I’m not just a weirdo.
It’s not uncommon for people with chronic illness to experience shame. What’s important to know is that shame can be toxic.
We must be conscious of these powerful feelings and work to overcome them so they don’t take over our lives. Below are some tips to help you when you experience feelings of shame.
3 Strategies To Overcome Shame
- Acknowledge your feelings and work through them. When you give voice to those feelings it helps diffuse some of their power. It can help to write things down in a journal. Or you might want to talk it out with a trusted friend or counselor.
- Be aware of the messages you’re telling yourself. They can either be helpful or tear you down. The things we repeat in our minds become ingrained in who we are. I’m reading an excellent book right now on this topic: What To Say When You Talk To Yourself. You may want to check it out.
- Accept yourself as you are now, give yourself grace, and develop gratitude for the little things in life. It may not happen overnight but embrace the new you. Take care of your health and don’t feel guilty about it.
“Shame derives its power from being unspeakable… If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither.”
– Brene Brown
Summary – Overcoming The Shame Of Chronic Illness
Our culture values personal strength and independence. But if you think about it, some also value fitting in.
Although it may feel challenging at first, the good news is that you get to decide who you are and what you stand for. You define who and what is important in your life. No one else can do that for you.
At the end of the day, it doesn’t matter what others think because God created you for a purpose, and your life matters. Greatly.
Plus, those of us dealing with chronic illness or other struggles in life need to be aware of the messages we tell ourselves. Don’t allow yourself to believe the lies that say you’re less than or somehow broken.
You’re not broken. And you’re not a victim. Embrace the fact that you were created for a purpose.
Now, take a beat.
Do you believe that? Like, really believe it?
Know that you don’t have to DO anything. Just be who you were created to be. And that’s everything.
Love your family and friends. Be grateful for the life you do have.
Yes, it can be that simple.
You can discover that embracing a new normal can be healthy and oh, so, freeing. Don’t worry about who society says you should be and step into the fullness and beauty of who you already are. Loving and being present for another.
And you may be delighted to find just how much that means to someone else.
Do you or someone you love have a chronic illness? How can you encourage them to look past what they can’t do and see that it’s who they are that matters to you?
I’d love to hear your stories, tips and comments below! X, Lori
For more you may want to check out:
- 8 Ways To Improve Your Communication Skills
- The Ultimate Gift Guide For People With Chronic Illness
- 10 Tips For Keeping A Gratitude Journal
- How To Sleep Better With Chronic Back Pain
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