“Hey how are you?” The sweet salutation from my friend was so simple, yet so weighty. She had no idea that most days were a lifestyle tightrope walk to manage my pain. But then again, why would she because I had never told her. I don’t tell most people because I don’t want to burden them. So I smiled and replied “good – you?”
To look at me you’d never know that I have had to drastically change my life and daily routine just to sidestep pain. Some days are worse than others – like when the barometer drastically changes, or the super cold days of winter (ugh winter), or when I’m stressed out. These all seem to contribute to my pain – as well as what food I eat, if I exercise too little or too much, sleep patterns, emotional well-being, soaps and shampoos and other products with environmental toxins. The list goes on and on and it’s a list I’ve been able to compile over the years so I can better control this pain and understand it.
I’ve shared all of this with a few people and unless someone is also dealing with an autoimmune disorder, they just don’t get it. So I stopped sharing.
But something happens when we stop sharing. It robs the world of our story, and it robs us of connection with other people. So, let me share some of what I’ve learned.
Let me lead you through the battlefield of chronic pain
I stuff my pain down deep where most people don’t see it. Most people have no idea about it. Unless you’re my very best girlfriends, or my mother, you probably don’t even know I suffer with chronic pain, or if you do, you don’t really know the extend of my pain.
You might know about my doctor visits because I saw you in the lobby or I had to take time away from one of my beloved volunteer activities to go to it. Or you may have noticed I missed a night of volunteering at church, or attending a kids event but figured I had something else to do.
As is the case with most people. Most people don’t know what it is like to manage daily pain. So let me tell you, it’s a battle. It’s a battle for your body and your mind.
If you’re living with chronic pain then you know it can be easy to fall victim to the negative mindset of “my life is ruined” or “I’ll never feel good again,” but that doesn’t have to be the case.
The battle for my body and my mind
My pain first started nearly a decade ago when my first son was born. I thought it was just the aftermath of childbirth.
There I was with a brand new baby and in so much pain. The newborn phase was not what I expected it to be and on top of the exhaustion of new motherhood, I had this pain I couldn’t shake.
Nearly 8 months later I discovered my “mystery pain” was Fibromyalgia. Once my pain was identified I immediately made huge strides to get it under control and manage my pain naturally. I changed so many things physically such as eating more healthy foods, drinking more water, getting plenty of sleep, and focusing on daily exercises – just to name a few.
This new regiment worked for years.. until it didn’t.
Nearly two years ago the pain returned. A full blood panel would later reveal several things including a gluten allergy, a mutated MTHFR gene, overactive adrenals and other factors. I realized it was time to get my shit together.
I knew that I needed to have the proper mindset if I was going to make the most of this new situation.
The first thing I learned was that when living with a chronic disease, it’s important to focus on what you can do. And, it’s equally important to not allow negative thoughts to dictate what you can and can’t do.
When you’re diagnosed with a chronic illness, there are many changes that take place:
* Change in your lifestyle
* Change in your attitude
* Change in the way you do things
* Change in how you view life
* Maybe even a change in where you live
That’s a lot and all these changes can certainly be stressful!
But our mindset is the biggest factor on how we choose to react to a negative situation – especially one that is all encompassing like chronic pain and disease. Remember, our reaction is always a choice. You can let the news debilitate you and knock you down even harder, or you can let it move you into new areas you might have never thought possible.
Make a Difference in the Lives of Others
You don’t have to be a TV or movie star to make a difference in your life or the lives of others either. There are many opportunities to help others and build a community. You’ll find the more you focus on helping other people in your same situation or worse, the better you feel because you’re not alone. Some of the things you can do include:
* Speak out about your illness
Don’t do what I did for so long and not talk about your pain. Speak up! Talk with family and friends because you never know how they may help you, or how the information you share with them may help someone else. Take it a step further and be a speaker at a fundraiser, in a school or at other events to help raise awareness.
* Fundraising activities and events
Get involved with fundraising, whether it’s in your local area or worldwide via the Internet. Many of these illnesses are fighting for a cure, or raising money to help people out or spread awareness.
* Volunteer at your local community center
Be proof that living with a chronic disease doesn’t have to be debilitating. Be an advocate for yourself and those with the disease.
I’ve discovered over the years that when I focus on other people, my pain seems somehow less. I’ve written a book about how to be a Fibromyalgia Fighter, I’ve published several posts on how to live with Fibromyalgia naturally, I send out a newsletter for those with Fibromyalgia and help out at events and activities.
* Don’t Bottle it Up. Get Support
Make it your mission to find others to rely on for support and encouragement. I bottled up my feelings and pain for a lot of years when I should have been seeking out help.
Getting involved with support groups gives you the social support that is essential to your mental and emotional well-being. Search for a support group online or in your local area and get active in the group. Be cautious though and find a group that is actually about support, and not just spreading negativity.
Don’t let the disease have control over your life. By taking action and getting directly (or indirectly) involved with finding a cure, raising awareness in your community, and speaking to others about it, you’ll find that life doesn’t stop because of the disease. Instead, many doors of opportunity are waiting to be opened by you.
Let it Refine You
If you’re a person of faith you know that it is in our darkest hours and our hardest times that we can be shaped and refined to be more Christlike. Allow your pain to shape your perspective, move you into new ways of thinking and focus.
Don’t get me wrong, I would love to not have to even think about my health concerns. I would love to not face the day with uncertainty as to how I will feel. But my pain has refined me in a myriad of ways. It reminds me that no day is guaranteed and that tomorrow could be worse – so enjoy today. It reminds me that life is fragile. It reminds me that my health, rest and self-care are important. I could go on and on but I’m sure you get the idea.