Marriage and Chronic Illness
Sheryl and I have been married for 43 years. We were married when I was 19, and she was 20 (one might say she stole me from my mommy’s arms, I mean not me, of course, but someone might 😊). Since our marriage has and continues to evolve, we say we have had multiple marriages, for various reasons. But, of the many marriages we have had, I like the present one the best. Maybe it is because in our 60s we are more settled, more content and better situated for the future.
Chronic illness and marriage
Even though our marriage has changed and evolved, one thing has and will always be consistent in our relationship: chronic illness. I was diagnosed with diabetes at the age of 17. Sheryl and I started dating when I was 18, so she has never known me without chronic disease.
I thought (and I expressed to Sheryl) that my life would be shorter, less certain, and riskier because of diabetes. I was not wrong for the times. In 1976 the level of diabetes care meant that I should have expected to be disabled in my 40s and likely dead in my 50s. Imagine asking a woman to marry you, then telling her that before she said yes, we need to discuss chronic illness, including death. It was a complicated proposal.
To Sheryl’s credit and my good fortune, she said yes. About six months later, we were married. I was a sophomore in college; she worked at a large grocery store as a cashier. We had little money and big hopes plus an uncertain future, talk about a way to start.
Two years later, we had our first child, and of course, the pressure mounted. With the arrival of our son, I had so much more concern about my health. Two years later, I was working in my field, and we had our second child. And already, we were on our second or third marriage. Each time our circumstances changed, we had to renegotiate what it meant to be married.
The challenge of arthritis
We were doing well when I was in my 40s. At the time, I was making more money than I dreamed possible and learning to deal with the new challenges of a job at the top of a growing organization. Luckily, the understanding and tools to manage diabetes had changed remarkably, and it was no longer foreordained that the life of a person with type 1 diabetes would be shorter, more painful, and the cause of early death.
One might rejoice about that news, and yes, I was doing well. But I also felt terrible. I had no notion of what it was, and that how I felt would cause us to enter a new marriage once again, but the diagnosis of RA was the trigger for many changes in our life.
We understood that RA was significant, that it might shorten my work life and change our married life. That was in 2000. I would go on to work another eight years, the pressure was immense, and the impact on my body was unreal. By the time I had to stop working my body was a wreck, and getting worse.
In 2013 I had the new diagnosis of ankylosing spondylitis, and that just deepened the pressure that rheumatic disease was causing. Almost with each year, it felt like my body was rebelling more and more.
Our relationship is built on change
Luckily, our marriage was built on the knowledge that it would be ever-evolving. When Sheryl retired, that changed our marriage once again. We were grandparents, and we had surgery (lots and lots of surgery). It has seemed like as we entered into a time that we should be more relaxed, we have been impacted most by chronic disease.
What I can say, however, is that the very thing which concerned me the most (diabetes) when I asked Sheryl to marry me is perhaps the least of our issues. Instead, AS and RA now dominate our plans and our lives. How are you feeling, when is methotrexate this week, can we do something based on the infusion schedule are questions we have to ask ourselves daily.
As we have aged, it is unlikely to change much, and that itself will no doubt launch new kinds of marriages. What if Sheryl gets ill? Will I be able to support her in the way she has helped me for so long? What if we require more assistance to live, will one of us stay in the house and one go to a residential treatment center? What will happen when Medicare and a Medicare supplement are our sole insurance, will we be able to maintain my level of intensive therapy? What happens if we cannot?
All of these things are bound to happen, and they will produce new kinds of marriages. Marriages we likely cannot even imagine at this time. But one thing we do know is that our marriages over the years have never been static; we evolve together and separately so we can face new challenges.
Come to think of it; that is precisely what people with AS are required to do in our personal lives. We will never stay the same; the key is to evolve naturally and embrace the changes. After all, what choice do we have?
How has your relationship evolved with changes in your condition?
Have you ever been made to feel lazy, even though you live with a chronic condition?