A Letter to My Love who has Cared for me Through Lyme Disease

My love,
You didn’t sign up for this. It’s a blessing that neither of us knew what fate had in store when we met.  I’m not sure that I would have been brave enough to carry on and I know that I would not have wanted to bring you on this grisly journey with me.

I’ve been sick for more years of our relationship than I’ve been well. At times, this disease has felt like it would engulf us and swallow us whole. Mercilessly careering through every aspect of our lives. Friendships, family relationships, our financial stability, the future we had planned before the Lyme-shaped curveball hit. We’ve been left reeling, wondering how on earth we ended up here and when this nightmare will end.

You’ve always believed that my illness is real. I remember you holding me squarely by the shoulders, looking into my eyes, hot and wet with despairing tears.  You said we would never give up searching for the answer to whatever this mysterious and frightening illness was.

It stings to reflect on the times that I was really sick, yet l hold dear all of the many ways that you have supported me. Bittersweet moments that we have shared, cementing our bond in spite of our world falling apart around us.

All the consultant appointments that you came to. My calm, supportive partner in the face of disbelief, disinterest and sometimes cruel mockery. Every time hoping that this consultation might be the one that would be the turning point and the start of my recovery.

Dressing our children in the mornings before you left for work because I was too weak to stand. Rushing home to cook dinner and bathe them while I lay in bed feeling frustrated and helpless. So afraid that this was the best my life, our lives, would ever be now.

You’ve shown such endless patience about every new treatment or therapy that I’ve tried. Always cheering me on, reminding me not to give up hope that I might start to feel better. I can do this! We can do this! Our home littered with pill packets, weird and wonderful supplements, sackfuls of Epsom salts and even a portable sauna.

Fielding calls from relatives asking how I am.  Not showing your disappointment that I was still unwell after such a long time. And no, this doesn’t mean that my treatment isn’t working. It’s complicated. Oh, so much more complicated than that. No matter how hard they try, no one ‘gets it’ like you do.

We’ve faced more than a lifetime’s worth of challenges together already. Without you as my witness, I would not believe the storms we have weathered. The years of misdiagnosis, confusing test results, fruitless investigations. The realisation that we were on our own and that any treatment would be private, overseas, expensive and experimental. Accepting that recovery will take years, not the weeks or months we were initially promised. We have long since stopped speaking of a cure.

I know how difficult this is for you. Thank you for staying. Thank you for sharing your life with me and loving me so hard through it all.

I love you.

– Anonymous