When I was a kid I asked my Mom how she knew that my Dad was “the one.” She said, “ Well, I was very comfortable with him.” At the time I didn’t find her answer a satisfying one- comfort didn’t seem too romantic. Fast forward 30 years and every time I think about our conversation I have to smile, because if you asked me that question today, I would give the same answer as my Mom.
Growing up with juvenile rheumatoid arthritis the idea of dating was terrifying, and marriage was something I thought would happen far in the future if at all. I told myself that the JRA was bad enough for me, I didn’t want to burden anyone else with it. The reality was, I couldn’t imagine that there was a man in the world that would voluntarily marry someone with as many challenges as me. I would have conversations in my head about it- the logical me telling myself that millions of people with disabilities get married, but the emotional side would always butt in and argue. As I’m sure you’ve guessed by now, I had some major self-confidence issues as a young person!
My self-confidence didn’t improve overnight, in fact for most of my dating life I chose partners who were too self-absorbed to notice most of my challenges and I liked it that way. I used up all my energy when I was with a boyfriend and would rest when I was on my own. It wasn’t until I was in my thirties and my JRA got so out of control I could barely function that I began to change, not because I began to feel more worthy; my decision was one of necessity. I had no energy to devote to selfish partners, so for years I was fully single, without one date, until a good friend took me aside and told me it was time.
Four and a half years ago I met my husband Todd. He says he knew I had arthritis before I told him; his first wife’s mother had rheumatoid arthritis and he was very familiar with how it looked. He told me, “ I know what I’m getting into and it doesn’t bother me a bit.” I believed him. His ex- mother-in-law was wheelchair bound and died of complications from the disease, so I knew he had a good awareness of the possibilities. Todd kept pursuing me, and when I had to opt out of social plans because I was hurting, he would stay home with me, never complaining or trying to coerce me to change my mind. Being an optimist, I always think that I’ll be getting better soon whenever a flare happens, but unfortunately that isn’t always the case. Todd isn’t fazed if my flare-ups last weeks, or months; instead he just alters what he does to accommodate my needs. Todd is the first man who I’ve ever let massage my left foot, the one that is badly disfigured from JRA joint changes; I finally found a man who I’m comfortable with. I guess Mother does know best!
The perfect partner will be different for everybody, and the perfect partner will never be perfect. Todd and I will be the first to admit our imperfections but often it is the broken parts of ourselves that help us to fit so well together. Todd lives with chronic head pain that often turns into migraines, and this pain helps him to understand many of the invisible aspects to JRA- the fatigue, depression, and brain fog, which are no stranger to him. Because he lives with chronic pain the JRA learning curve he’s had has been much smaller. There are certain conversations that we don’t have to have, because he lives it too. I’ve never heard him complain if I sleep in or go to bed early, he never makes fun of alternative treatments I try; so many of the difficulties I’ve had in relationships in the past are just not there.
At times Todd is my caregiver. He’s carried me around the house for days on end during a bad flare. Currently, I’m in the process of recovering from neck surgery so Todd is always there to help me in and out of the shower, and is my right hand man for most of the day. He rarely tries to direct my health journey because he knows how hard it is to handle unwanted advice. The wonderful thing for both of us is that often I can return the favor when he is hurting. We say that we are each others caregiver, and for both of us, that feels very comforting.
I honestly don’t know if I would ever have married had I not met Todd. I always knew it would take a special guy for me to want to marry, and it took 44 years to find him. What would I say to young people with RA looking for love? Find someone you will let massage your disfigured left foot. He (or she) is worth the wait.