Not vibing with your doctor?
One of the most overwhelming parts of the special needs parenting journey is dealing with all the new professionals you will meet: physicians, specialists, therapists, social workers, etc. Depending on the severity of your child’s needs, you could be seeing a new specialist every single day for weeks. While many hospitals offer ways to navigate the complexities of scheduling for special needs parents, not all do. Managing day-to-day life with a special needs child is already overwhelming, and adding the burden of scheduling and attending numerous appointments can lead to exhaustion.
When we started this special needs parenting journey, my husband was just finishing up medical school. Having a physician for a spouse and father to our children with special needs is both a blessing and a curse. He knows just enough to be helpful, but he also knows just enough to stress me out. He knew the right things to ask and the right things to look for, and I have never taken that for granted. At appointments, when it becomes clear he is a medical doctor, we receive a different level of respect and understanding. However, when I attend appointments alone, it's a different experience. I often have to reveal his profession if we disagree on something, using what I call the "doctor wife" card.
I could list every single time I have felt disconnected from a doctor in this blog, but we all have our stories. What I want to encourage is that whenever you feel like you are not “vibing” with your doctor - even a specialist - you have a right to find a new doctor. You have the right to express your concerns to the physician and the facility. And if you struggle to articulate how you are feeling, allow me to help.
How you approach a physician you are struggling with is a delicate juggle. If you’re a Midwesterner like me, you know the anxiety that goes into telling someone you are unhappy. Approach the situation with knowledge and empowerment. Advocate for yourself with poise and kindness. Let them know why you are frustrated, angry, or unhappy. Although it may not seem like your job, giving them feedback provides something to think about if and when you decide to leave their care.
Here are some phrases I have used and found helpful:
It’s not my intention to offend you, but I’m sure you can see my frustration.
If you can tell me why pursuing (fill in the blank) would harm my child, then I will drop it. But as his/her mother, I need to look under every rock.
I respect your knowledge, but I am his/her mother. My instincts tell me we need to (fill in the blank).
In our previous city, our pediatrician supported my holistic approach to our daughter with Down syndrome. She told me, “I am not an expert in Down syndrome, and I am not an expert in your daughter. You are.” She would caution against harmful paths but was open and understanding. She sensed in me, and I believe in all medical parents, the need to TRY and dig deeper. Since then, if I don’t feel that level of respect from a physician, I move on. Life as a special needs parent is stressful enough. I want to leave appointments with a plan and a supportive physician.
If you need further assistance, please schedule a complimentary welcome session. In addition to advocating for inclusion, helping parents with the medical journey is one of my biggest passions. If you are looking for a great resource, here’s a link to my free Medical Binder - a must-have resource!