Dear Medical Professionals,
A recent message to the List Serv from a woman who was unhappy with the medical care her daughter is receiving has compelled me to write this.
I know that your jobs probably require long, exhausting hours, and the last thing you want is to be told how to care for your patients. My goal is not to upset anyone, and this isn’t directed at any specific person. I give all of the doctors, dietitians, genetic counselors, etc. props for all that they do! So many of you are amazing, and I wouldn’t be who I am today if it wasn’t for some of the awesome medical professionals who came into my life. Think of this more as friendly food for your thought.
Next time you are seeing a patient keep in mind that…
1. We are people first and people living with a genetic disorder second. If we forget to draw blood or send you a diet record understand that we attend school, work, extracurricular activities, and so on just like everyone else. We are trying our best, we really are. We’re just trying to lead lives outside of the medical world as well.
2. Some of us aren’t as clueless as you might think we are, so please don’t be offended if we want to try something our way first before doing it your way. It’s just that many of us adults and parents of older PKU children have been dealing with PKU long enough to have a few tricks up our sleeves.
3. Most of us want to have a positive relationship with our medical team. We like it when you get to know us as a person. It makes us feel as if we are more than just a name with a disorder slapped next to it, and we are more likely to trust you if you show us that you truly care.
4. We need you to stop and ask yourself if the medical advice you are giving us is really practical. If it’s not chances are we aren’t going to be able to do what you are asking of us, because sometimes it’s easier said than done.
5. We are going to make mistakes, and when we do we need you to be understanding. There is nothing worse than knowing you made a mistake and feeling even worse about it, because you are being reprimanded like a child. This is especially important to remember when you are working with teens! Being a teen is difficult in general. Being a teen with a genetic disorder is harder. Just be gentle and try not to give them one more thing to stress out about and dislike in their lives. They didn’t ask for this disorder and are probably doing the best that they can.
6. We might make decisions that you don’t agree with. You need to respect those decisions even if you completely disagree with them. These are our bodies (or our children’s bodies) that we are talking about. We are the ones who have to live with the decisions that are made regarding our medical care, so in the end we are the ones who need to make the final call.
7. If we express a concern about our treatment or an abnormal symptom that we are having we want it to be taken seriously. Chances are if we are taking the time to bring something to your attention it means we really do think it is a problem, and we don’t want that problem to be brushed aside.
8. You should encourage us to interact with other patients living with the same disorder. Obviously this is a little bit more difficult with HIPAA laws, but if you know a family or patient is struggling ask other patients to give consent for you to provide their information to that family (not sure if that is an okay thing to do under HIPAA?). Provide us with information about websites and local support groups, because the companionship and day-to-day advice that we can get from one another is so invaluable!!
9. Although sometimes it’s hard not to give your advice, when it comes to parenting decisions just remember that you aren’t the parent. You’re the medical professional. Your job is to provide medical advice, so please do so and avoid the parenting advice unless someone specifically asks you for your take on a parenting issue.
10. New parents of PKU babies are probably extremely stressed, afraid, and heartbroken. Be mindful of what you are telling them, because the last thing they need is to be terrified even more. Ask them whether or not they want to know only what they need to know right here and now or if they want to be told what to expect in the future. Some parents might not want to overwhelm themselves while others might be going crazy inside, because of the unknown.
11. Everything you say and do can have a huge impact on your patients lives! I cannot say this enough. You might not realize it, but you are so important in our lives and when you treat us like crap we remember it. When you go the extra mile and really provide us with the best care that you know how to we also remember that. Above all if you aren’t in this profession because you really want to help people, then find a new job!
Yours truly,
A girl who wants quality treatment for all PKU patients (and all disorders for that matter!)
Peace, Love, and PKU 
I love my medical people at Waisman and appreciate them SOOOO much! (3 in particular, one smiley brunnette, one bubbly blonde with PKU traits of her own, and one super nurse practitioner who can’t help but show extreme care and passion for what she does daily!) Breanna is right…when we feel we have been talked down to, we remember it but when we feel we have been treated exceptionally, we also remember it. I’ve had a far-from-loving relationship with a few medical professionals in the past but am SO thankful for that amount of support I have now. It’s great to be a Wisconsin resident with PKU, especially if you doctor at Waisman!
…just a sincere thank you to those who have helped me become what I am today.
Barby I wish wordpress had a like button, because I would definitely like your reply LOL. Couldn’t agree more. I’ve had my share of awesome doctors and dietitians to, and I cannot thank them enough!
Amen Breanna. I am 37 yrs. old & I’ve gone thru many changes thru the yrs. with the treatment of PKU. I know very well how to manage my diet but can honestly say I’ve had periods in my life where I struggled like when I was a teen. Then got great &.strict with my control as an adult again & yet now I find myself struggling my hardest as I am now the mother to 3 very active kids. My daughter is 5 & my twin boys are 3. I find that my life is totally consumed by caring for them, the house, errands, ect that I barely have 5 minutes to devoted any time to myself & as everyone with PKU can understand is that managing this diet takes time which I have very little of. I just hate the medical staff acting like I am making excuses cuz I’m not. I’d love to see them manage this diet perfectly 24 hours a day for an extended period of time along with everything else they must do & do it perfectly 100% of the time…I doubt they could.
Very well written Brea! As a nurse, I think that many medical professionals would do well to take this advice. Especially your last sentence. I don’t think people realize it sometimes, but if they’re in this profession just for a paycheck, their patients know it. It’s blatantly obvious who wants to do this and who doesn’t. It’s so easy to become hardened and almost jaded by our noncompliant patients. Even though there are patients out there who legitimately don’t care and aren’t trying, until we know a patient and know them well, we cannot assume that is the case. Just as you’ve stated, we have to assume that they’re doing their best so that we can give them the best care possible. I truly believe that you are going to be an awesome nurse! You have the heart for it, and that’s one of the most important things in my opinions. I’ve always said that if you give a patient the choice of two competent nurses and let them choose between the one that’s a little smarter, or the one that’s more compassionate, the majority of the time, they’ll choose the more compassionate one. Good luck to you, dear!
Thanks Allie! I guess I never told you I decided not to pursue that degree in nursing though did I? It just didn’t seem right for me anymore, and I didn’t want to be one of those nurses who doesn’t care lol.
No you didn’t! We have got to talk soon though! It’s been forever! What have you decided to do now?
Definitely! We haven’t talked in forever! I decided that early childhood/elementary education might be a better fit for me. I’m absolutely loving my classes this semester, so I think I probably made the right decision.
Good for you! That was initially what I wanted to do. And I think if I ever change career paths, I will. But at that point in my life, I was far too shy and reserved for that. Best of luck to you. I know how much you love those kiddos!
Excellent post Breanna and very well said! This letter should be sent to ALL PKU clinics! :]
This is well said indeed, I totally agree with Stephanie.
Although I must say that I’m lucky enough to have a fantastic medical team in my hospital, they’re doing a great job. Thanks for that, this also has to be said 🙂