Love, its complicated!
Why RA is truly beyond me…Find out how my whole family has adjusted to living with RA.
Alice’s story: I have rheumatoid arthritis (RA). It’s an incurable, autoimmune disease that often renders me immobile, exhausted and sometimes confined to my sofa.1 Thrust into a life of pain and uncertainty, I require multiple forms of medication on a daily basis to function. Oh, and by the way I am a busy mother of two!
Following my RA diagnosis – five years ago – I had a tough time accepting my limitations, planning my battles and enlisting all the support I could generate. Anxiety, self-doubt, guilt, feeling like a “bad mother”, all visited me regularly. I tried to explain to my young, beautiful children that “Mommy was sick”, and as much as I wanted to carry them in my arms or go to the playground with them, I simply couldn’t. They wanted normality, I wanted to get my life back and still do. Somehow, with a lot of help and many tears and adjustments, my family has adapted and reinvented our own positive, loving relationship. It is not the same as it was, or as it is for other families, but it’s ours and it’s real. My participation in our family life is sometimes limited, but my children understand. Every day, I’m learning as much about RA as I can. I also listen carefully to my body. I’m used to doing lots of activities on the weekend that I know I can do. But now I might be risking my strength for the work week, and I want to still be there to support my kids in their school life. So, I’m making adjustments, they have too, and we are incredibly thankful for the good times.
At times I have been forced to lay my life bare, to ask for and accept help. To explain my illness and its limiting consequences and expose my vulnerability. At first it was difficult to talk to my family and friends about my RA and the way it was affecting me. From their perspective, I didn’t look any different or show obvious physical signs of the pain and fatigue I was feeling inside. People don’t understand RA like other more common chronic diseases like cardiovascular disease or cancer. So, I have to first educate them about RA and compare it to other autoimmune diseases like type 1 diabetes. Most people can relate to those more common diseases and know how serious they are and get a better sense of what I'm going through. What is horrible is experiencing the stigma of having a disease people don’t understand. When people hear RA, they tend to think of their grandmother’s twisted-up hands.
I tell them it’s more like cancer and my inflammation is my tumour. That usually gets their attention. Living through the challenges of RA, my relationships have been strengthened. Life is constantly stressful, from preparing the children's lunches, to school drop offs, to going out for dinner with friends – I am uncertain whether my pain and physical limitations will interfere.
At its onset, RA not only impacted my life, but left an indelible mark on all of those close to me. This is especially true of my husband. He never signed up for this. Past references to sickness and health suddenly became very poignant. His role morphed into that of a carer as well as a partner, inexplicably changing both of our lives forever. But that isn't to say that life is easy. Our relationship has weathered the demands of my illness, but it has not escaped unscathed. Communication is essential. My husband and I have come up with new ways to talk about my RA and my daily level of pain and fatigue. We learned how to express ourselves in new ways to talk about intimacy. Based on my experience, I believe that chronic pain experienced by one partner definitely ends up affecting the lives of both partners, so sharing our feelings, concerns and desires is a really positive first step.
With this acquired wisdom and empathy and love, my husband, my children and I continue through the inevitable process of trial and error, good days and bad days, to find new ways to love each other. So, while love is complicated, it’s worth it!