Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to find the best care plan for you or your child.
Something that’s not discussed as often as the physical toll of rare disease and chronic illness is the aspect of control.
No one chooses their diagnosis. Typically, everyone’s done everything in their power to curb the effects of the disease and what it’s doing to their body.
This can feel like your body isn’t cooperating with you. Constantly being poked and prodded by doctors and taking medications that you know will make you feel sick can make you feel like you’re not in control of your body.
For adult patients, some of this control is regained through the decisions they make about their healthcare. For instance, they can cancel appointments and switch doctors. For children it can feel like just about everything is out of their control. Passing smaller decisions along to them can help them feel more in charge. As kids grow up, however, they seek more independence on multiple levels and choosing band-aide colors isn’t going to cut it or help them prepare for their future.
Every pre-teen wants a little more freedom, in what they wear, where they go, and how late they stay out. As children with rare diseases get older they’re going to understand more about their diagnosis and, as the only one truly in tune with their body, they’ll become the experts in their healthcare.
Parents can help facilitate this by providing their kids with everything they’ve learned over the years about their child’s condition. The more informed their child is, the better off the child will be if they ever need medical care while they’re away from their parents.
As the child continues to get older, the decisions surrounding their body become their own. They understand risk and benefit and can begin to make the calls on what will keep them the healthiest.
Blair Van Brunt, the founder of Rare Disease Perspectives LLC, is the mother of daughter with Swachman Diamond syndrome.
She asked that Patient Worthy share some of the wisdom she presented on MassBio.org about this transition. Facilitating the independence of someone whose well-being you’ve been solely responsible for their entire life can be difficult.
Blair uses the analogy of a ship to illustrate the transition from being her daughter’s primary caretaker to her daughter taking care of herself. Blair started off as the captain of the ship and then her daughter became the first mate and eventually captain.
Her daughter Gracie, spent a lot of time in the hospital when she was young and Blair kept track of symptoms and medications and sought out specialists. When Gracie reached high school it was hard for her mother to refrain from asking her about her symptoms the way she used to but she let Gracie determine when she felt she needed medical attention. When Gracie received her driver’s license she began the first mate of her health ship. Her mother encouraged her to drive herself to her pediatrician’s office nearby and they’d discuss the appointments together. Blair made sure that Gracie knew what types of questions to ask and what medications she had adverse reactions to.
Gracie’s step to moving from the first mate of her health to the captain was a trip to a specialist’s office that was half an hour away. She successfully made the appointment and got all the results she needed from the doctor. Her competence as captain was next proven at an appointment in Boston to see another specialist. While her mother is nervous for the next big leap, Gracie moving across the country, she knows that her daughter knows what she’s doing.
Here is her list of tips to help other parents who are approaching this transition with their children.
- Allow your daughter/son to make her/his own decisions within the realm of safety
- Educate them on their disease
- Make a list of emergency contacts together
- Role play on how to speak to medical personnel
- Teach them about their medications and how and when to take them
- Encourage them to wear a Medic Alert bracelet if appropriate
- Educate them on insurance
- Know they will make mistakes- but we all do and we can learn from them
- And finally love, love, love them
