“Coming together is a beginning. Keeping together is progress. Working together is success”
There’s an article in Time Magazine this week, which seems to confirm a long held conception: Women are the primary health care providers in a family. They make the health care decisions in 66% of households, and account for most of the spending on health. They make the doctors’ appointments and get the family there on time. The article explains that there are evolutionary reasons that accompany societal expectations- women spend far more time in the process of having a baby, and therefore are more wired to protect that investment of offspring. Another reason given is that women, throughout young adulthood, are attuned to regular doctor’s appointments – whereas men generally go back to the doctor regularly only after the age of 40. It was a pretty interesting article….
It certainly is fairly true in our family’s case. In the nine years that Caitlin has had a chronic disease, I can count only three doctors appointments that I did not attend. For my two boys, who thankfully only have regular check-ups and an occasional visit for an illness, I’ve been at every appointment. Essentially, I’ve made my job choices over the past decade based on this reality. I am not the main bread winner in my family…. But I have a part time job with great health insurance and flexibility that allows me to spearhead our health campaign.
BUT – this is only part of the truth. Because, believe me when I tell you – I don’t think I could do this alone. I have a tremendous partner on my team. He may not be at every appointment or lab test – but he is there when the chips are down. And he has my back and I have his ear when we need to make tough decisions. He is on. My. Team. And team is not only figurative – it is literal. There have been nights when our daughter could not sleep – from chronic pain, from fear and anxiety, or from prednisone induced insomnia. And her stubborn will has reared up like a dragon, refusing to be comforted, refusing to be calm. In those wee, weary hours of the morning – it’s possible for a parent to lose his or her cool. To yell, or demand…. Or become exasperated. And I have snuck in to wake my team mate (who gets up at 3:30am to go to work) to request back-up… he takes over when I need to have a time out. He takes charge during the worst of the game. He was the one to go in when she had a spinal tap, because I didn’t feel like I could make it. He was the one to walk with her into hip replacement surgery, as I cried in the waiting room. He has stood by her head as anesthesia put her to sleep – twice – so she could have hip injections by fluoroscope. He does the toughest of the jobs.
To be honest, I’m not sure this was always the case. In the early days after diagnosis, it sometimes felt that some of the people who loved my daughter so much, including my husband, were my adversaries. They did not want to believe the diagnosis… so it was natural to question. Everything. They questioned the veracity of the doctors and the choices of medication… and we got second opinions, and I read everything I could get my hands on. After I was convinced, I spent much needed energy convincing others. Their skepticism was fuel, flaming my already growing fears about my daughter’s future. Sometimes, it felt like I was alone – not because Dave wanted any less for Caitlin, but because he wanted the very same thing – and was also trying to find the best way to get there.
And needless to say, men and women are different. I don’t have the words to explain it – there have been whole volumes that can’t explain it. But a piece of it is that faced with the same problem – my husband will immediately look for the way to solve it, while I might spend longer examining how the problem affects us. I am more emotional. He is more pragmatic and practical. He is closer to black and white and I am all shades of messy gray. Stereotypical…. But true to an extent. Which makes this disease such a challenge for people who are good at solving problems… there is no clearly defined path to a solution.
A turning point came for us when we attended the National Juvenile Arthritis Conference. Dave and I attended different sessions there – in 2004 in San Diego. We were doubling up on the education. He attended a session by our pediatric rheumatologist – and it changed everything. In it, our doctor talked all about the new medications coming through the pipeline. Somebody asked a question about potential negative side effects. Our doctor responded – “I can’t guarantee what will happen if you try this drug. But I CAN tell you what will happen if you don’t do something to get this arthritis under control”, and he pointed to some photos of deformed, crippled joints. Bam. As clear as black and white. Change of game completely – and Dave was totally on my team. Somehow, having information so clearly presented cleared up the questions I had been trying to face alone.
Over the years, I’ve met many parents who are standing this battle alone. Sometimes, it’s because they are a single parent. But sometimes, it’s because this disease has wedged between their team so deeply, the partner ended up on an opposite side. Sometimes, the team mate does not agree with the choice of treatment… the medications…. The therapy. Sometimes, they are still fighting against the original diagnosis. Sometimes, the cost of the disease, financial and emotional, is too much to bear. I am in awe of those people – they do what they have to do, easy or not. I always hope for those parents that somebody will be on their team – a friend or a family member who will have their back, prop them up, and give them a break. I wish for everybody to have the good fortune that I have…
I’ve actually know my husband since seventh grade. We dated when we were in junior high school and stayed in contact over the years, but essentially traveled different roads. We started dating again as young adults – so we have a long history together. He is the very essence of everything that makes men wonderful. Because of him, I do not have to decide alone, fear alone, carry alone. So, yes, I am bragging. Usually, it’s my face answering the questions, my butt in the chair at the doctor’s office, my words on the blog. I might be the one people see – but it’s a unified spirit behind this effort. We are a team and I am blessed every day because of him.