My Guidebook for Living With Chronic Pain

By Mia Maysack, Guest Columnist

Chronic pain can mean a lot of different things, depending on its severity on any given day as well as the seriousness of the condition that causes it. Those of us of who live with it are already at somewhat of a disadvantage, as opposed to others living more carefree lives.

Chronic migraines, for example, make it difficult for me to be able to complete even the simplest of daily tasks due to the confusion, pain, overall sensitivity and over-stimulation they cause.

This creates a mandatory “go with the flow” approach to life due to the unpredictability of symptoms. Plans, appointments, dates, commitments, family gatherings and social activities -- not to mention work -- are constantly needing to be changed, rescheduled or canceled. That gets old fast for us, as well as for everyone our absence affects.

There's no limit to how great of a ripple effect that can have. I have a personal nagging guilt I carry in my heart each time it happens. In an effort to alleviate the pressures, I've gotten to the point where I do my absolute best to avoid making plans.

I may live mostly feeling “under the weather” but at the end of the day and all throughout it I am still a person. I have agendas, hopes, dreams and goals, so please understand the disappointment and frustration I feel from continually placing everything on hold and being powerless to stop it.

Picture this: A thief breaks into your home in the middle of the night. Imagine watching this person tear your home apart, destroy so much of what you care about and worked hard for, yet you are unable to do anything to control the situation or make it stop. That criminal for me are my migraines. They steal a lot from me.

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Several times now, I have had a successful life built only to witness the big bad wolf of head pain come and blow it all down. Then I am confronted with gazing upon the ruins my life and reflecting on how much it took to get there in the first place. I then decide that dwelling in the past will not fix or solve nothing, so I take a deep breath and clean up the mess yet again.  

There has never been an employment situation that has not been impacted by my illness. I'm a worker bee, but pushing myself so hard for so long has resulted in an inability to continue onward with my aspirations. The realization of not being able to live up to who you want to be is a tough one. One cannot refrain from inquiring within, “What is wrong with me?”

All the while, outsiders have the same question, most with a tinge of disbelief: “She looks and seems fine. What, if anything, is really wrong with her?” 

Taking Care of Me First

One of the greatest gifts I've ever given myself is taking care of me first. Whoever is meant to stand by you through this treacherous journey will always be understanding when you do. 

Think of it this way: When you know someone that you care about is feeling unwell, what do you do?  You offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health.

We as chronic pain sufferers deserve the same compassion, empathy, respect and self-care.  I've learned that forgiveness, patience and grace for ourselves is just as important as having those qualities available for others. 

Never once have I had a medical professional ask how I am doing in terms of coping with this heavy burden of a life-long condition. It has been an excruciating process to get to where I am now. There is no guidebook for living with chronic pain. So I created my own.

I prefer to find the positive in changes as they come and to not worry or over-analyze them after they've arrived. For me, it's all about finding the joy, beauty and blessing in the given moment. There is always something to be appreciated and admired.

There's no doubt that an underlayer of sadness accompanies our ailments and it's important for us to understand that is completely normal. It's also crucial to allow ourselves to truly feel that grief. There's no expiration date or time limit on learning how to deal with this crappy hand we have been dealt. We keep our poker faces on as we figure out how to conduct ourselves because folding up or giving in is will never be a suitable option. We are tough and have come too far to do that.

When it gets to be too much and you're not sure how much longer you can hold on, raise your stakes and tell the universe: “Let's do this. I am all in!”

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Mia Maysack lives in Wisconsin. She is lives with chronic migraine and cluster headaches. Mia is a proud supporter of the Alliance for Headache Disorders Advocacy and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.