Amongst parents with AS, there is one question we’ve all struggled with: Which aspects of my disease should I let my child see and which should I protect them from? It’s a big question and there’s no one-size-fits-all answer – finding the right answer for you can be a simple case of trial and error. In my next couple of articles, I’ll offer a few do’s and don’ts I’ve picked up over the last few years.
The A to Z of the ER
Believe it or not, I think the emergency room can be a great place for your child to see – as long as you’re not mid-flare when they visit. Children know when you’re sick and, if you often have to vanish suddenly, it’s good to set their vivid imaginations at rest by showing them where you go.
Sawyer’s first reaction to seeing me in the ER was one of interest, not fear. He saw I was comfortable, met all the nice doctors and nurses and I could instantly see that he felt reassured. And let’s face it, it doesn’t hurt that a visit from our kids makes us a hundred times stronger, braver and happier, right?
Take a trip to the pharmacy
With so many pharmacies happy to deliver your meds, you may find it odd that I recommend making the trip yourself, let alone bringing your child with you.
The pharmacy can be a great place to introduce your child to AS without overwhelming them. They can see your medicine comes from a normal store full of normal people who also need pills. They can talk to everyone waiting (putting a smile on their faces) and meet other young people who are sick, showing them their parent is not the only one.
I spend a huge amount of my life waiting for prescriptions. Inviting my son, Sawyer, turns that wasted time into bonding time for us. Sawyer can look at books about health and illness - he even enjoys playing with the bottles, stacking and restacking them. Being with me while I buy my medications also helps him feel part of my recovery - a positive role he can feel proud of.
Get a hand with volunteering
Even if your AS means you’re working shorter hours or not working at all, you’re probably still involved in some arthritis-related volunteer work every now and then. If not, I strongly recommend it. Feeling productive and being around others with similar conditions does a lot to build the positive attitude needed for life with a chronic illness.
I work with ‘Patient Partners,’ a program pairing patients with medical students to teach them how to perform musculoskeletal exams on real people and for one of my three-hour sessions, I had no choice but to bring Sawyer. I’ll admit that I was concerned about the outcome at first but it was a wonderful experience for everyone. The students benefitted from seeing that people with these diseases have families to take care of and Sawyer had a blast playing doctor, increasing his positive relationship to my disease. Who knows – I may even now be raising one of tomorrow’s rheumatologists…
Sawyer has also attended The Arthritis Society’s events like The Walk to Fight Arthritis, The Kids on the Move Camp and Juvenile Arthritis Family Day. He loves these events for the face-painting, arts and crafts and other activities, but, ultimately, he loves meeting other families dealing with the same issues as us.
AS is a scary illness to face, even for a grown-up, and knowing that it will likely affect you every day can be a hard thing to accept. Helping your child understand your condition and the limits it places on you means one less source of pressure to overstretch yourself and one source of support for your AS life.
This article was written by Bjillian Mackinnon, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.