Learning to Love Your Chronically Ill Body

This post has been written for A Chronic Voice‘s October 2019 Link Up Party for Chronic Illness.

I’ve also written it time to celebrate World Mental Health Awareness Day (October 10th) and World Arthritis Day (Today – October 12th).

We should be celebrating mental health awareness day every day since almost everyone is struggling with something! You're not alone. Click To Tweet

Learning to Love Your Chronically Ill Body

Learning to love your chronically ill body sounds like an impossible task. Every day we’re reminded that our bodies are not temples and that they are failing us in many ways.

This makes it especially hard to love yourself knowing that your legs may not carry you on a short walk or your back might give out, or your stomach won’t accept what you’re trying to feed it.

Hard does not begin to describe what it is like living in a body that operates at 50% while everyone else is running on full charge.

My mental state of health tells me something negative every single day. I have to work at ignoring that little voice in my head that is full of self-hatred, doubt, and worthlessness.

It’s important to have days when you can grieve for what you’ve lost. That’s how you start the process of loving what you still have.

From there, you can begin to live with and love your body for what it is still doing for you.

Some good came out of  losing so many things that I used to take for granted before I became chronically ill.

I’m stronger. No, I haven’t developed superhuman strength, but I have developed tolerance and resilience to deal with certain situations that I didn’t handle well before I got sick.

I’ve grown with these debilitating changes in my health. I’m learning to love my chronically ill body because it’s still going! 

Learning to turn away from situations or people that cause more drama or stress is important. Recognize that this is going to happen no matter what and avoid them at all costs.

Mistakes are learning lessons. I’m no longer afraid of how others are going to react when I say no.

Being more honest and realistic about my limitations with chronic illness is also key to learning to love yourself. For the longest time, I felt afraid to tell people how I was feeling. I’ve started addressing insensitive comments as they happen. For a long time I stayed silent, even with family. I don’t do that anymore.

I’ve had to overcome obstacles simply because I live in a world that is not accessible to me. I’ve had to develop strategies and skills to get around these obstacles to protect myself. I’ve learned not to give up.

It takes years for us to adjust to our new normals. The tribe I’ve found on social media has been there for me 100%. They make a huge difference in how I see myself and have helped me navigate my journey through life.

 Waiting for this flare to end.

Wait and Be Patient

One of the hardest lessons to learn when you’re chronically ill is learning to be patient. It seems like waiting is all I ever do. This lesson has changed me in a profound way.

All my life, I have never been a procrastinator; I was a doer. I went from being a woman who gets things done to a woman who spends 90% of my time waiting.

  • Waiting for flares to end
  • Waiting at the hospital
  • Waiting for test results
  • Waiting for some energy to come back
  • Waiting for doctors to finally hear what I’ve been telling them for years
  • Waiting for someone to help me with a task that I can’t manage on my own
  • Waiting
  • Waiting
  • Waiting

Control no longer has a hold over me. Sickness took that away from me. I can’t control what happens to me, therefore, I’ve had to let it go. There’s only so much I can do.

What I’ve learned from this is something that most people never see.

We live in a world that is on the go constantly. Everyone is whizzing around, complaining about being busy and overloaded with work.

It’s all meaningless if you can’t continue with it, and ultimately, that drive to thrive in this world ended up making me sick. It’s hard for me to stay silent when I see others going down this path. We all know that no one will want to hear it. They have to learn it for themselves.

I see the frantic pace that most of my family and friends maintain. I want to tell them so badly that you can slow down a bit.

You can wait and you can rest. Don’t wait for your health to make this decision for you. Do it for yourself now.

Perseverance is Key to Living Well

In the first month after my diagnosis in February 2009, I was brave and confident. I didn’t show how scared I was although I could barely walk or stand. I didn’t acknowledge how much my life was going to change. I thought I was going to bounce back. It never occurred to me to think about how much my life was going to change until 2015.

My doctors didn’t tell me what was coming, and I didn’t reach out for help with an Ankylosing Spondylitis organization until 2012 when I had my second big flare.

I was so sure that I was going to beat the odds and the numbers and that the medications would help. Once I had a name for what I had been suffering from for over a decade, I felt like I had less to be afraid of.

Wow, was that ever the wrong attitude to have! Big mistake.

The numbers are there for a reason. I shouldn’t have ignored what was going on with my body and keep pushing through thinking I’d beat it.

I persevered at the wrong time, friends.

There is a time and place for perseverance with illness, and it’s not at the beginning of your diagnosis when you think everything is fine and dandy because you finally have a name for your health woes.

As the illness settled in and my inflammation levels got higher, I got sicker. The medications began wearing me down over the years. My nights became sleepless with pain and apprehension. My days became filled with nausea from medications.

Despair found me and I hit rock bottom, and it has continued to find me to this day. I’m still hitting rock bottom pretty regularly. 

Yesterday was World Mental Health Awareness Day and where was I?

At rock bottom in the dark, isolated, crying my eyes out in bed, and feeling like I had no one to reach out to who would understand.

I didn’t want to see one anyways. Most of us don’t want to deal with people when pain is present, so I was glad, for once, that my husband was not home to witness what was going on with me.

Luckily, an online friend – a woman I’ve never met whom I call a very dear friend – stayed online with me and we chatted until I felt better. She reminded me to persevere. Tomorrow is a new day.

Perseverance is keeping me on my feet. Perseverance is helping me accept how my illnesses impact my life. Perseverance keeps us going. Click To Tweet

Affirmations, Please

Self-affirmations can be great tools for keeping your mental health in track and finding motivation to move on hard days. Practicing positive thinking can help you overcome negative thoughts, but by all means, allow yourself to grieve when you need to.

Trying to find a moment or two of joy in each day can be a very powerful way of dealing with illness and pain. Whether it’s snuggles with a loved one or a pet, a little extra sunshine, a good book, or hearing from a friend – it all helps.

Live your life in a way that helps you with your self-worth. Learn to love your chronically ill body. Find the joy in each day. We are all doing the best we can. You've got this! Click To Tweet

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian expat who has been living abroad in Asia since 2003. I moved from China to Taiwan in 2006. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. Follow Carrie on on Twitter @globetrotteri or on Instagram at https://www.instagram.com/carriekellenberger/.

10 thoughts on “Learning to Love Your Chronically Ill Body

    Anne

    (October 12, 2019 - 6:58 pm)

    I can relate to so much of what you have written here. I too thought I could beat my illness, in fact after my first hospitalisation I was convinced that I would be ok again in 6 months (Which seemed like a lifetime at the time.) It’s now been nearly 4 years and my new diagnosis is progressive. It’s funny how a single word added to your diagnosis can make such a big difference, I used to think of progressive as a positive word until it was applied to my illness. Waiting is the bane of our lives and perseverance is our saviour.

      Carrie Kellenberger

      (October 19, 2019 - 1:25 pm)

      Hi Anne. I’m on your site right now reading through your post this month! I think a lot of us just expect it’s never going to get as serious as we think it is. That’s the power of positive, I guess? I’m also progressing quickly. The first year after my diagnosis in 2009 was bad, then I got better, achieved remission and then that got botched when we lost my brother. In 2015, I got hit with fibro and ME and it has all progressed quickly since then. From being able to work out to being able to walk less to finally admitting I need a wheelchair and now to what is happening today: disability and barely being able to leave my home. Thank you so much for stopping by and that last sentence of yours is a keeper! That really resonated with me.

    Karl Kauffman

    (October 12, 2019 - 7:28 pm)

    Thank you for telling us your story of how you haven’t let your pain keep you from experiencing love, compassion, and showing us so much what is beautiful and important in life. You’ve shown us that despite illness and pain we can still develop human virtues and become established in self-actualized state of fulfillment, and we are so much more than just our bodies.

      Carrie Kellenberger

      (October 19, 2019 - 1:26 pm)

      Karl,

      I don’t know what I did to deserve your friendship or compassion, but thank you so much for always reaching out and for always being there for me. You are an incredible person! I am so grateful to have you in my life!

    Rhiann

    (October 14, 2019 - 4:25 am)

    Hello Carrie,
    Thank you for sharing this beautifully raw and honest blog with us all. It is one that really resonated with me as I totally agree that it is so difficult to find for a body that is constantly letting you down. Thank you for sharing your story, and for some great coping techniques to help find love for our bodies again.

      Carrie Kellenberger

      (October 19, 2019 - 1:28 pm)

      Hi Rhiann,

      I really loved your post too and thought, ah, wow, we are all thinking the same things and this makes me feel less alone and more understood. I need to think of more coping techniques! I haven’t finished reading the rest of the articles in Sheryl’s link-up party, but hopefully I’ll find some there. If anything, I know I have friends that get it. Sending gentle hugs!

    Sheryl

    (October 14, 2019 - 11:45 am)

    Always such a treat to have you with us, Carrie! Thanks for giving us an update of your life in October with chronic illness…the waiting game really sucks hey. And the point about perseverance in the right and wrong times is spot on too. Too often, especially when we’re young, we push through for all the wrong reasons. Sending gentle hugs x

      Carrie Kellenberger

      (October 19, 2019 - 1:30 pm)

      I honestly thought I’d be able to participate every month and failed badly at that! Hopefully I can do the last two of the year, Sheryl. These parties are such a great way to speak about things that no one really talks about. And yes, the waiting game stinks. But I have a feeling it’s going to be there for the rest of my life, so as they say Carpe Diem (with a book)! Hugs to you too!

    Naomi

    (October 20, 2019 - 9:00 pm)

    Lovely to read your take on this. I know you’ve read my link up but I did another called ‘life in slow motion’ recently which mirrors some of what you’ve said about slowing down. Just saying I’m there with you on that topic! Always affirming to hear others say too 🙂

      Carrie Kellenberger

      (October 23, 2019 - 2:02 pm)

      Naomi,

      I’m so glad you stopped by and so glad to have a new friend. I really loved your site! I need to go back and read some of your other posts after getting your Twitter message. Thank you so much for reaching out!

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