An Open Letter to a Loved One From a Chronic Pain Sufferer

By Mia Maysack, PNN Columnist

The sun is shining and the birds are singing. It’s a beautiful day.

I open the door to let my doggy daughter out and the brightness peers through like a lightning strike straight to the hypothalamus. I'm struck by intense searing pain that feels like a hot poker through my eye -- otherwise known as a cluster headache attack.

I try not to dwell on the inevitable reality of the hearty serving of migraine that's sure to make its encore appearance soon.

The next plan of action is to get my head into an ice bucket, but I first must draw all the blackout curtains in every room.  The day is done, at least for now, and I am at the mercy of these ailments. There's no way of knowing how long they'll last so I focus on breathing, as I attempt to calm my nervous system.

Me writhing in pain is the unfortunate greeting my loved one often receives after his long days of working in the world, while I’ve remained inside this cave, putting in long hours at the hardest job I've ever had -- surviving this. 

When we initially got engaged, I planned the entire wedding in only two weeks because I must take full advantage of the moments when I'm at my most able. At the time, I was still making a nursing salary and able to contribute my fair share to the festivities.

Much like any other couple, we had plans. To begin a family, travel the world and support one another in making our dreams come true.  

As things worsened through the years and pain levels heightened, my condition reached a point where even hugging hurt me. This was a very difficult loss and forced me to reflect on the situation – and what being and having a soul-mate looked like.

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There are days it is almost impossible to take care of myself, and as heartbreaking as the realization initially was, the decision not to commit my life to another was made. 

This didn't change the fact that this person is my best friend. We have shared the purest form of intimacy, which is remaining present for one another throughout the worst of times -- when it's not ideal, convenient and downright hard.

Whether in the form of sleepless nights at the ER, helping to brush my hair, holding onto me to help my balance, or slowing his pace so I can keep up -- regardless of an official relationship or title that others understand -- he is and always will be my family.

I appreciate him for many reasons, one being that he accepts there's only so much I can do. He does not consistently attempt to “fix” me, because we've both learned the importance of surrendering to the current moment while always maintaining hope in better ones to come.

By remaining devoted to his presence in my life, he's making a conscious effort to reassure me that I am not alone — never losing patience or becoming resentful no matter how many times I have to postpone plans or cancel commitments.

He sees me as more than just the "Sick Girl." He's complimentary of who I am outside of these illnesses, as well as the warrior I've become as a result of them.  

Perhaps I won't ever have a glorious wedding and maybe this isn't going to be a white picket fence fairy tale. But to have someone who understands what I have to offer and what I don't, respects my need for freedom, and displays selfless acts of sacrifice is one of the greatest gifts in my life. Shouldering these burdens together is the truest testament to love I have ever experienced. 

It's beautiful to have that mutual acceptance, free from judgement or expectation, to simply just be who and what you feel. I thank the universe for this person, as well as the others in my support system.

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Mia Maysack lives with chronic migraine, cluster disease, fibromyalgia and arthritis. Mia is a patient advocate, the founder of Keepin’ Our Heads Up, an advocacy and support network, and Peace & Love, a wellness practice for the chronically ill and those otherwise lost or hurting.

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.