Why I Won't Let the 'Grey Days' With a Chronic Illness Win

I’ve had a grey week — one of those weeks where the cold seeps through skin, bone and muscle to drain every ounce of energy. It’s been a strange week, filled with back-to-back hospital appointments, disappointments and loneliness.

I’ve spent most of my days in waiting rooms or in discussions with medical professionals interspersed with brief interludes of feeling miserable before putting on a fake smile to greet consultants, technicians, nursery staff, and my daughter. I’ve also had serious issues with work and had to drop everything and run to meetings to defend my position, trying to convince a room of superiors that “Of course, I’m healthy enough to be there every single day,” without being healthy enough to even sit through the meeting.

This is a familiar dance. Every day that passes I feel as though I lose more to this disease. I’ve had a grey week. I’ve spent hours silently looking at my daughter and wondered why I try to fight. Why I take meds, go to appointments, have tests when losing this battle isn’t up for debate; it is the only endgame. And it often feels that way, like there is little point in trying if all there is to be gained is momentary sparkles of a life I can almost touch, but never have. I’m also tired. Tired of fighting for everything, day in and day out. Tired of hiding problems. Tired of seeing what those problems do to people I love and who love me. So I sat and considered my options, whilst sinking into a dark place. I thought of stopping all treatments, all appointments, all tests. I even, momentarily, thought of leaving the house to unburden my family.

And then I remembered this is a familiar dance. I’ve been here before, come out the other side, and lived to tell the tale. This disease may have been gaining ground, but I’ve won every single battle that matters so far, and have survived and recovered from encephalitis, strokes, anaphylaxes, infections, endless blood clots, tons of experimental meds and thousands of procedures. And I have become wiser for it.

Regardless of the level of difficulty each day brings and whether the difficulties are at times insurmountable, I “get” to have new days, too. I turned 30 this year, which is a milestone no one thought I’d live long enough to see. I have a daughter who survived an unlikely pregnancy and delivery and is the happiest little girl I know. I have a job, a home, friends, a family. And I’ll be damned if I don’t put one foot in front of another and fight for more days for as long as I have the privilege and ability to fight.

So it has been difficult. It will continue to be difficult. But I’m gearing up for battle — bacteria, auto-antibodies and errant b-cells beware!

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images