A Letter From Suzanne

Greetings,

Did you know that February is the month of romance? Thus, here we are trying to speak about romance in our world of lupus. Interestingly enough I found myself struggling with the word romance. After a great deal of research, my beliefs about romance are quite different from the literary world.

I am blessed to have the best husband in the world, although I may be biased. Together we have made February our happy month for over fifty years. Some pretty great things have happened to us on Valentine’s Day making it our favorite day of the year. We were married on Valentine’s Day, I opened my jewelry store on Valentine’s Day, we got the key to a new house on Valentine’s Day and our daughter was also married on Valentine’s Day. By the way, did I mention my maiden name is Valenti? Just a giggle.

Here is what I found out: In the strictest academic terms, romance is a narrative genre in literature that involves a mysterious, adventurous, or spiritual storyline where the focus is on a quest that involves bravery and strong values, not always a love interest. However, modern definitions of romance also include stories that have a relationship issue as the main focus.

After learning this and looking back, was all this just a quest? I thought romance meant to be in love and the journey of getting there. I guess it is all about perception.

It has been an adventurous journey for us after all, since I have been a sickly person from the time we were married. It has been a roller coaster of ups and downs. It was indeed mysterious being misdiagnosed for over 19 years. We leaned on our spiritual belief system to see us through the storms. We were blessed with tremendous family support, and we have dug deep to find our strength to navigate our storms. Our prayers gave us the strength to keep us brave, while we found our way to achieve all of the above and live with lupus too. I do not want to leave out hope either. We needed plenty of hope along the way too.

Did you know the divorce rate amongst lupians is around fifty percent? I can honestly say that from being sick so young to now as an older woman with lupus, it presents relationship issues that are unexpected. There is no pretending here. It is very difficult to stay on course in life when illness hits a family. I cannot sugarcoat this reality. I have sat with many couples trying to help them create a new world with a chronic disease. Some of them were successful, some were not.

I do not pretend to have a magic secret on how to manage a relationship while being ill. I do know that it does take both of you to manage it. Start with a healthy conversation. Bring a third party in, that you trust, to help if you need it. I do know many fellow lupians that have had successful relationships. It can happen! But, it really starts with you (a fellow lupian). Trust your partner and communicate with them.

Most of us are dealing with fears and what-ifs. As a couple, you both must understand what lupus is and seek to understand how your beliefs and desires will work with your new life ahead of you. Do not look with your eyes, do so with your heart and then look for the win-win. This is a huge statement from me. I have seen where the fellow lupian is only focused on them. This is a huge roadblock. As a couple, it is us, not an I.

God knows my life may look perfect to the outsider, but you were not along for the journey. As I age, I know that more storms are ahead, but I also know that we need to continue on our quest. Yes, it is a romantic one. But we will continue to need strength and bravery from each other.

So, at the end of the day, my romance story will continue. But with all my heart, I know you can find your own quest and make it your romance story.

Enclosed in this issue we share other couples that are living with lupus. They too have had a quest. See what you can learn from their stories. We also included a great article called, What is your Love Language? This can be entertaining and/or educational. Either way we hope it leads you to more romance in your world.

Together with my staff, our wish is to help you on your quest with lupus challenges. Please let us help. We are here to be a part of your lupus journey and we all really like a good romance story, too.

With a loving heart,

Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter