When I Told the Man I Loved I'd Be a 'Poor Partner' Because of My Illness

I knew I loved him the moment I took the empty seat next to him on our first night of our graduate school literary theory class. It was a fated moment I never thought would be mine, and it felt like I had found the missing half of my soul.

On our first date, after time together at a bookstore cafe, we sat across from one another in a pub, and I struggled to find the words to tell my future husband how ill I was, how doctors still had yet not fully diagnosed my rare disease, which would be identified as stiff-person syndrome (SPS), 21 years after onset of my symptoms.

I knew I had to tell him at our lunch date. I prepared myself for the inevitable brush off too familiar from my friends and family when I admitted the severity of my illness.

I was terrified to lose him just for being completely honest.

Yes, true fear made my hands tremor uncontrollably as my fingers shook around a ketchup bottle. Still, he deserved to know before we fell further in love.

My voice wobbled as badly as my hands, but somehow, the words came out.

I watched his face as I revealed my innermost struggles and hurts, my medical odyssey, my fears and the knowledge my disease was progressing and, so, I said, I would make a poor partner. I told him I did not want to be a person he would have to take care of or come to resent as a burden later in life.

I realized I was telling him all of my greatest fears as I spilled ketchup all over my plate with trembling fingers. Tears sprung up in his eyes and he grew radiant with the most divine smile I’d ever seen in my life. He laughed softly and said, “Ketchup fingers, I know I was put on this Earth to love and care for you. I know it in my bones. I was struck by a thunderbolt when you first turned and looked at me. I love you, and neither you nor your disease can get rid of me. I am not afraid of it. I just want you. I cannot exist without you.”

I could not believe my ears. I was stunned, a blubbering mess of tears and ketchup before our waiter, who smiled and refilled our glasses.

That was 18 years ago. This man has experienced the best, worst, and most horrifying parts of my SPS. He’s been there for every torment: the harshest medical procedures, my acute pain, muscular jerking and rigidity which progresses, without a cure, daily. I know it has made him feel helpless, haunts him with worry, and has made him angry at the lack of help from doctors and at SPS itself, as he watches it work to destroy my body daily.

Still, his first vow to me remains ironclad. He loves with the greatest generosity of anyone I’ve ever known. In all truth, without him, I do not think I’d be here today. 

Most SPS patients struggle alone. Abandoned. Left with no help, no cure, no hope, only despair for company. I know very well how incredibly fortunate I am to have a soul mate who is magic itself.

I vow to keep fighting for my fellow SPS warriors and myself. Thanks to the strength my true love has granted me, I somehow find a way to forge ahead for all of us as an SPS advocate.

18 years ago, I expected to be forgotten all over again, and my hero leaned over to hold my tremoring ketchup fingers. It is a vow unbroken, a promise more powerful than any rare, incurable disease could ever become. We all deserve this loyalty, this wild courage, this unflinching goodness in our lives.

Every day my husband’s infinite love is my joy SPS has always tried to steal.

Our love is my rescue.

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