Coping with Chronic Pain: When to Break the Silence

Winter sunlight is a warm old soul, spreading love in the bitter cold.

-Angie Weiland- Crosby

Exulansis

Have you ever heard of the emotion, exulansis? It is the tendency to give up trying to talk about an experience. Because people are unable to relate to it.

Can my chronic comrades relate?

I have lived in that space. Until I started this blog. It is a way to talk about my journey. It was lonely to keep it all in. It felt like I was the only one. But I keep hearing of people who are reading the blog and have had similar experiences. We are not alone.

Have you subscribed to the blog yet? Go to the bottom of the page. Hit subscribe. Just fill in your name and email. And you’ll get a weekly email with a link to the newest post. Please share with anyone who would benefit. From the discussion here. Or from a walk in the forest. And watch my social media. (Instagram, Facebook, and X). For upcoming forest therapy walk dates and times as the weather warms up.

Masking the Pain

I try to hide the pain. In social settings I smile and visit and try to be present. When I see photo evidence I recognize I am not as sneaky as I think I am. Why do we do this? Why do we hide chronic pain?

I have some thoughts. But I’d love to hear yours. Comment why you think we hide the pain in chronic illness? Here’s my non- comprehensive list of why I think we hide the pain:

1. With invisible illness there is a fear of not being heard or taken seriously
2. Some people choose to be private about what they are going through
3. When people know, they treat you different
4. Previous negative experiences when sharing
5. It is almost impossible to put it all into words and the emotion is close to the surface
6. Social pressure to be normal- to make others comfortable
7. Shame and guilt- in all its forms
8. Avoiding the feeling of being a burden, needing pity or sympathy
9. Fear of judgment- have you met people? They’re awful!
10. Denial of the illness and its effects- ‘I can do this on my own’ type of attitude

☝🏼 Can you see yourself in this list? What would you add? ☝🏼

The Health- Privileged

Those privileged enough to know only health do not understand. How could they?These are the ones that will ask if you are better. They are watching only for improvements and progression to a cure. It does not occur to them that your chronic illness does not come with such commodities.

While this can be frustrating. I find it helpful to have a sound bite ready to go for such cases. Instead of staring blankly while your mind searches frantically for where to start. Not everyone needs the whole story. Just a few sentences. ‘My illness is chronic. I have better days and worse days. And for now that is as good as it gets.’

We can honor our own progress in a way superior to what someone on the outside can provide. From past experience we know how this goes. It might be hard today, easier tomorrow and hard again the next day. I choose to meet myself where I am. Regardless of improvements and progression in the standard way. And that is my route to healing.

The health- privileged will not understand. But as a group of chronic comrades we can provide that understanding for one another. It is said, Health is a crown and only the sick can see it.

Chronic Comrades

I THINK IT'S BRAVE
by Lana Rafaela

i think it's brave that you get up
in the morning even if your soul is very weary
and your bones ache for a rest

i think it's brave that you keep on
living even if you don't know how to 
anymore

i think it's brave that you push
away the waves rolling in everyday
and you decide to fight

i know there are days when you 
feel like giving up but i think it's brave 
that you never do

I am thankful for the few on the outside that want to understand and help. Here are some helpful tips for those of us that live with and love those with chronic illness. Here are some things that seem small but are actually big to those that are suffering:

1. checking in on us makes us feel loved- even if we can’t hangout, the connection is significant
2. being heard- having someone hear us and trust our ability to handle it, not take over and offer unsolicited advice
3. when I say I need to rest and someone rests with me- I don’t need to be motivated, I need to be supported
4. comfy clothes- they are the only way for my arms to get through a day
5. going at my pace- whether walking or making a plan, I appreciate being able to move at my own pace
6. when someone asks how I am and I answer with the standard ‘Fine’ they ask, but how are you really? I feel seen.
7. meeting people going through something similar- another reason for this blog

You Should Know

It’s important to know that people with chronic illness will have stomach issues, dizziness, nausea, headaches, joint pain, muscle pain, fatigue, and more everyday. These are all essentially invisible. Especially for those who have learned to cope. My grandma knew how to cope. I hope I can emulate her example. Remember you never know who is in pain just by looking.

Coping vs Shutting Down

Is this is the main reason to hide the pain? Is it a coping mechanism? We cannot moan in pain all day long. Learning to listen to your body and ignore the pain is a skill. What are the right coping mechanisms in chronic illness?

Dr Gabor Mate said, When you shut down emotion, you’re also affecting your immune system, your nervous system. So the repression of emotion, which is a survival strategy then becomes a source of physiological illness later on.

Is this also true in a way for shutting down pain centers? What is the difference between coping and shutting down? To me, coping is a way through the pain. Through the darkness to the other side. Shutting down is staying stuck in the discomfort with no plans to get out. This is where I found despair. When we grin and bear it instead of answering the call for what our bodies need, what does it cost? Does it take a bad situation and make it worse?

Maybe you have had a similar experience to mine this week. A new symptom appeared. Instantly, I have so many questions. Is this a symptom I will have as my new baseline? Is it just a flare? How will this affect everything else? Can I handle this?

Hiding Below the Surface

We often fill our day until it is overflowing. I believe that this is true especially for women with chronic illness. Then everyone wonders why this Mom is such a mess. At least that’s what happens at my house. 🤷🏼‍♀️

Like a water balloon that can only handle so much weight before it tears. Ask yourself, what was in that balloon that it could not handle one more drop of water? What is already happening under the surface that is filling your balloon to bursting over an insignificant event? Here are some possibilities:

Emotional dysregulation. We all have emotions. Do you know how to handle the negative ones? If not, they can sit and fester like a wound. Chronic illness comes with its share of negative emotions. Constantly filling our cup up to and over the brim if we don’t learn how to process them. In a healthy way.

Lack of understanding, empathy and compassion. We all crave being understood and cared for. In chronic illness there is an added bonus of feeling misunderstood in the medical world. Finding that understanding somewhere is vital and replenishing.

Mental exhaustion. It is not just physical fatigue we deal with. Trying to figure out what to make for supper when the mental exhaustion has set in is awful. Like trying to thread a chicken through the eye of a needle. Mental exhaustion is not something that can be ignored. It is in your face.

Self deprecating thoughts about how you should be able to do more. No matter what we do as moms and women, we want to do more. Exponentially so in chronic illness. We think we should be able to do what we used to do. We wish we could be ourselves again. We think we should have the ability to push through. Just like the rest of the general population.

I was sick yesterday. Having a minor cold or infection is a big deal in chronic illness. It causes a flare in my other symptoms. My body aches were quite enough before this bug. The fatigue that comes and stays with any upset in the baseline is debilitating. What little time or energy I had is sapped out of me. And recovery is not quick. It is a long and slow process.

Add to the list: anxiety, frustration trying to find the words to communicate, sensory issues, and hormones.

Once overstimulation hits, I know I have already passed the point of no return. Overstimulation is not being able to focus. Everything feels overwhelming. I can’t remember or process anything. Everything is irritating.

From Overstimulation to Emotionally Regulated

Then what? What can you do to move through this situation and come out with minimal effect? How do we cope and not shut down?

Please congratulate me on my new position. It is the fetal position. I will be in it for a while.

-@kristen_arnett

The first step is to remember that you are not selfish if you need to remove yourself from the overstimulating situation. You are allowed to care for yourself. You are allowed to opt out of overwhelming environments. Getting adequate rest is not an indulgence but a necessity. Crying is one way the body regulates itself. Go ahead and cry. It is not weak. Forgive yourself for any reactions. You have limits and that is okay. Learn to listen to them. Honor them.

Unlocking Your Full Potential

You are meant to thrive. Not just survive. My veins are filled with stories of survival. Surviving looks like flight, shutdown, protection, fighting, impulsivity, mistrust, rigidity, critical of others, anxious, anger, defensive, collapsing, freezing, fear, submitting, shame, despair.

While thriving includes regulation, connection, resilience, prosperity, goodness, passion, love, contentment, expansion, well being, ease, play, rest, repair, joy, trust, growth, stillness, presence, and health in all its forms.

Shout out to all those making their life with chronic illness a life of thriving. You don’t let anyone see your darkest moments. Nobody knows the effort. I know how hard it is to transform yourself. Silently battling and winning. Be proud of every little step you are making. Keep going! You’ve got this!

I find it easier to thrive when I am with the right people. They are the ones that help me to feel sunshine when I am around them.

Forest Therapy has been my way of coping. It is healthy and beneficial in so many ways. This is not a hike, this is deliberate invitations that lead to learning and healing. Join me in the forest when the ice has melted. We can get on the trails in and around Saskatoon for some much needed forest therapy. My body does not winter well. I am anxiously awaiting. Spring! Dates and times TBD. Watch my social media to see when and where. If you have any questions reach out to me.

Tell me, when was the last time you ran through a field just to feel the freedom of creating your own wind.

-Author Unknown