Better living through science, they say. That’s been my life since childhood. I was a sick, sick kid. Due to my constant exposure to latex through a number of operations and procedures as a young person, I have a latex allergy. Due to the constant in-and-out of the ER, hospitals, and specialists from South Bend to Indy and back, I have a serious fear of health care. I hate doctors and love them. I love them for saving my life and letting me live the life I deserve. However, I’ve had a lot of bad with the good. So, when my kid needs medical care or has a serious reaction to something I am allergic to, I tend to lose it a little. In short, I get why some parents don’t like doctors or worry about motivations. However, I’m here to tell you all to take a deep breath. And if you’re telling people to treat their ailments or the ailments of their kids with untested, unregulated supplements or remedies, you are part of the stigma problem. STOP IT.
Instead of making unfounded, unsupported claims on facebook, please read on. I’ve been in the trenches and this is my truth. And this is how I’m coping with the reality that my kid may not be immune from scratch testing and run-ins with doctors as she grows.
When I was really little, I could not advocate for me. My parents had to. My poor mother went through hell and back to make sure my sister and I were treated well. But I think she felt disempowered at times and unable to push for more. When it was clear for years I’d had trouble breathing and that it was responsible for a whole host of ills by the time I was 12, I finally said something. I basically demanded someone do something because I was afraid in gym class. I thought I was going to pass out. Our then-doctor was a person I would label as “woo”. She didn’t seem to take anything seriously. My mom trusted her because that’s what you do. Mom didn’t have an MD. She didn’t have a PhD. She was and is whip-smart but that provider-regular-joe power imbalance, I don’t think she felt she could say anything.
Then our insurance changed and my life changed. We had a new doctor who was younger, not woo, and seemed to be more focused on the research and best practices of the last 10 years of research. She diagnosed me with asthma quickly and could not believe I hadn’t been treated for it at all. Without throwing our past GP under the table (I would have but she’s the better human), she basically said we needed to get me a rescue inhaler ASAP. And eventually, when it was beyond her abilities to manage my pretty severe asthma that seemed to get worse over time as I aged rather than dissipate as other kids “outgrew” it, she referred me out a specialist in South Bend. We drove too regularly too and from South Bend which was an hour away in another time zone. It was hard. I can’t imagine! But I’m so thankful for it.
Eventually, my mom advocated for a second opinion when it became clear I might need more help and they agreed to refer me to Riley Children’s for more tests. Riley was awful in many ways because it was scary and I was a kid. Still, the doctors were wonderful. And before anyone thinks that good care still can’t be traumatic, I’m here to tell you that it can. We spent weekends down there as if it was normal to go “on a trip” to see doctors and have a bunch of tests run. It’s not normal. It’s crappy. It was sad and stressful. I have a lot of anxiety about treatment.
And then, when it was identified that the constant allergy attacks (set off by perfume and smoke) may be a result of residual inflammation and constant sinus infections and bronchitis, we racked our brains alongside an amazing nurse practitioner I still consider to be the reason I have a normal life today and hatched a plan. More doctors. More fun. Fun like having panic attack even on Xanax in a closed CT. Yeah, I’m terribly claustrophobic, guys. But that led to me being put into the care of a dreamy ENT. Honestly, he bore a close resemblance to my husband so I may have developed an attraction to prominent-nosed, wiry, tall men because of him. He looked at my imagining and sent me the same day for pre-op testing because my sinuses were SO BAD.
I had surgery and it was life changing. Again, this is not without some trauma. None of this is “normal” or “good” for a young person. It is not easy. It’s hard for ADULTS. It was hard for my parents. It was absolutely what I needed. I remembered having my first bout of a cold post-op and assuming I would be down for a week or more. But nope. I was sick for a couple days and recovered without antibiotics for the first time probably in my life. I was a success story. Somewhere my imagining is in a study he published advocating for sinus surgery in persons under 20 who could benefit from this technique. I consented to it because I was then 18 and could. Then, I had my only “normal” period of adolescence when I was 18 and 19. I could finally exercise! I could finally go to school and not worry about passing out! These things my peers took for granted I could finally do. I went to college like a normal kid.
I don’t know if all you normals can comprehend this but despite all the amazing things I was able to do academically and musically, I was fighting tooth and nail to climb that hill, disabled by my obvious handicaps. Mental illness now sometimes makes me fight so hard to be normal that this served me well in some ways. But, for me, as a parent, it’s not what I want for R. As a parent, you want your kids to be “normal”. I felt robbed of a normal adolescence. I lived so much of my life sidelined by asthma and endometriosis. I still do. For someone who has never experienced that like my husband, it’s hard to express what that means. When I interned on case management for Medicaid clients, I realized I had more in common with our 65+ year old clients than I did with people my age. Soak that up for a minute. We were on the same meds. I helped train case managers and caregivers on how to safely manage COPD and asthma because I had become an expert by age 22. I also was able to give them a run down on how people with these disorders can be affected emotionally and how it impacts mental health. I will repeat. I was 22 and had more in common experience-wise and meds-wise with my elderly clients than my peers.
So, when I needed a lot more medical intervention for mental health issues as an adult, it was traumatic. When my kid was born with some minor complications due to her exposure to Zofran during my pregnancy – she had a late poop because it causes you to be constipated – I really struggled. But would I take the meds again? Yes. Because I would have died without them. It’s not a great tradeoff. It was terrifying. Still, I would go for the meds and better living through science every time. I would probably just advocate that they introduce baby stool softeners at birth knowing this if I did it again. I hopefully won’t have to.
When R had a medical emergency at 6 months and needed surgery, I was triggered even walking into that hospital. I could not believe how much my world crashed down around me even when she needed imaging. I did it on my own. I didn’t think it would be anything major but it was. And there I was, alone, being shamed and treated like crap because my kid wasn’t breastfed because I had PPD and a mood disorder and needed my meds. But that mom-unfriendly (Baby Friendly) facility was our only hope. I worried her care team would not take the best care of her because she was a defective, formula-fed baby. Thankfully, it didn’t come to that. But why should I have worried?
R went 2 years without having any exposure to a typical doctor’s visit for being sick. That was the most stressful day of my life as a parent. It should not have been. But it was. And then when she reacted to these diapers (we both did), I about died. Realizing that she’s allergic to this common and hard to avoid substance has been so hard. I am coming to terms with this. And I’m worried for her. I don’t want the life I had- and have- for her. I really struggled with whether I even deserved to have kids due to my health history. Sometimes, those fears still creep up. But I am a whole human, I remind myself. I’m so resilient. I am so strong.
And I have to remind myself that doctors are scary to me because of legitimate, awful things I’ve been through – scary procedures, hail Mary’s that failed, and terrible psych providers when I couldn’t get into someone else. Still, the good has outweighed all the bad.
Recently, I’ve come across some great commentary from a real-life physician – Aaron Carroll of Healthcare Triage and IU School of Medicine. This is not just a shameless Hoosier plug, I promise. Dr. Carroll has been open about his struggles with mental illness and other chronic health problems. He’s also been critical of journalistic accounts of health and also medicine’s pitfalls. His candor makes me realize doctors deal with this stuff, too, and that they grapple with this when treating patients. Because doctors – the real doctors – are in the same place as us. As parents, as people, etc. And when he calls out the academy on it’s BS and inability to acknowledge mental illness as a serious and more common, it’s something I can’t clap loud enough for. And he’s also incredibly funny! Please follow him on Twitter if you want to laugh and cry.
Another great source of commentary that gives me faith is the Sawbones podcast. It’s hosted by a husband-wife team. Dr. Sydnee McElroy and her husband Justin (a regular joe) breakdown medical fails and oddities and give you some real-life insight into the stuff doctors deal with.
And if it makes you feel better, I am an expert googler and use all of my access to scholarly publications to vet basically anything that is prescribed. I arm myself with knowledge and bring it to the table with my providers if I feel it’s relevant. I’m sure this drives them nuts, too. But, I want to let them know I am invested in this and that my POV matters, too. When I had a maternal mental health consult at 28 weeks, I came armed with journal articles about why they needed to put me back on my anti-convulsant the minute I gave birth and why I was prioritizing this over breastfeeding 100%. I knew that mom-unfriendly (Baby Unfriendly) system was going to be a shame-fest. They pressed me once and then said they agreed with that course of action and boom. We had a plan.
So, don’t blindly follow. Don’t always just assume your doctors are always going to be evil but be an advocate for yourself and your kids. On major things, a second opinion is never a bad idea. If a doctor has an issue with that, that’s on them. If it’s emergent, of course, there’s maybe not time. But, hopefully at that point, you trust your referring provider enough to make it work. Honestly, that’s what matters most. Do you trust your family doc to refer when necessary? Does your practice stay up-to-date on current peer-reviewed research? Do they make you feel like an idiot or do they make you feel part of the process? To me, when I feel these things are taken care of, I can let the rest of it go. The first couple of appointments make me paranoid. I still can’t take our kid to a well-visit by herself after that emergent issue was discovered at a visit where I flew solo. I may never be cool with that. That’s my issue and it’s better my husband has 0 hangups with this stuff and can be the point man.
If your doctor isn’t working for you, I hope you can find a good one. Minimize the stress. And realize that even “good” medicine that is 100% necessary is not without stress. Ask a childhood survivor of chronic illness and they will probably tell you that while medicine saved their lives and they credit their doctors with their quality of life now, it’s not without trauma. It’s not ideal but everybody’s got something. And it should not prevent parents from providing medical care. Especially you normals. I have a PhD and suffered immensely from an incompetent, outhorsed GP and I still trust my kid. And, yes, I trust her to Riley Physicians. Driving 3 hours to spend the long weekend getting tests was not great. It sucked. But I am confident that if my kid ends up in Riley, she will 100% get the best care.