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).
[bctt tweet=”We should be celebrating mental health awareness day every day since almost everyone is struggling with something! You’re not alone.” username=”globetrotteri”]
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.
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
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.
[bctt tweet=”Perseverance is keeping me on my feet. Perseverance is helping me accept how my illnesses impact my life. Perseverance keeps us going.” username=”globetrotteri”]
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.
[bctt tweet=”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!” username=”globetrotteri”]