How many times have you been at a doctor’s appointment and felt feelings of doubt and anger while listening to your doctor explain a treatment plan or talk to you about what’s necessary to ease your pain and manage your symptoms? Sadly, there’s probably a good chance you’ve felt this way. I know I have, on several occasions. Anyone who knows me, knows I’m a bubbly and outgoing girl—I rarely stay quiet and I’m not shy about sharing my feelings. For some reason though, there are times in my patient journey with Crohn’s that I’ve left doctor appointments in tears or felt enraged by how I was treated. Silenced in the moment and then ranting in the car to my husband or mom about what I just experienced. It’s like I couldn’t find the words in the moment and then found them the minute I was out of the room with the doctor.
A fellow chronic illness patient, by the name of Ricky White, reached out to me recently. He battles a chronic, degenerative disease: Ankylosing Spondylitis (AS). This autoimmune condition is a form of arthritis that primarily affects the spine. Ricky is a writer and a registered nurse—he has the unique viewpoint of the what it’s like to serve in the medical profession and what it’s like to be in the patient’s shoes. This perspective inspired him to write a book entitled, “Taking Charge: Making Your Healthcare Appointments Work for You.” Ricky reached out to see if I would be interested in reading his book and writing a review. I gladly accepted the offer and was instantly intrigued by the subject matter. What I didn’t realize is that I would read the book cover-to-cover, in a matter of hours. The same day Ricky reached out to me about his book, I started and finished it. It was that good…all 152 pages. And let me tell you folks, seeing that I have a baby who turns six months next week…that speaks volumes!
When you have a chronic illness like Crohn’s or AS, or any condition for that matter—you are used to always having constant check-ups, blood draws and appointments. When you finish up one appointment, you make the next one. Trying to find a doctor who fits your needs, understands your goals for treatment and doesn’t leave you feeling like less of a person can be easier said than done. There needs to be trust. You’re putting your health and your well-being into the hands of someone else. Oftentimes it’s not just one doctor, but a team of specialists—in all different areas of medicine.
In the book, Ricky writes, “You are not a generic patient. You are unique with your own needs, so treat yourself uniquely and not as a checklist of symptoms from the internet.” This really stood out to me. Don’t ever feel like you are just a number or just another medical case. You are a person, with extra needs. Your personal struggles and pain should not be minimized. You should feel empowered and stronger after a doctor’s appointment, not like you are trying to prove that you need pain medication or that your medication isn’t doing anything to silence your symptoms.
In the book, Ricky also talks about the importance of making long-term goals and not just focusing on the present. He writes, “We’ve talked about long-term goals. Make sure they aren’t neglected for the “now.” So, if need be, interrupt the flow of the appointment and change its focus to what you both do to help long-term. Even if your long-term goal is very long-term (for instance, years). It still should be mentioned briefly at each follow-up appointment to make sure you’re still on track and it is still a relevant and appropriate goal. Your health will change over time, it’s important that your goals change with them.” This is so important for so many reasons. When I was engaged and had my bowel resection surgery, I made it clear to my doctors that I wanted to start trying for a family right after my wedding. My drug and vitamin regimen was altered with that in mind, so was the timing of colonoscopy. Having clear communication and being open about what your hopes and dreams are for the future is critical. While doctors may be able to perform miracles with their hands in the operating rooms, master magician and psychic aren’t usually on their resume.
Ricky makes a great analogy in the book about how a first doctor appointment is like laying the foundation of the house and that follow-up appointments are when the house is being built. That house—just like your treatment protocol and management will oftentimes change. He goes on to say, “Do you use a washing machine to clean your clothes? Or do you scrub them in the river? Both methods work, but sometimes new things come along that are just better. The same is true for medical treatments. New treatments are constantly becoming available. Maybe there’s a better one for you. Don’t be scared of change. Be excited by it and embrace it.”
This book will make you feel like you are in the driver’s seat. While nothing is a cure-all, it will give you the tools needed to feel strong and have a voice the next time you’re sitting across from someone in a white coat. This book will give you the confidence so many of us lack when we’re in a doctor’s appointment. By being prepared—having questions written down—and looking at our doctors as allies and teammates rather than our enemies, we have the ability to be our own greatest advocates. None of us should feel the need to prove how sick we really are. We should be able to have honest, open and mature dialogue with a person who understands our diseases on a whole different level. I’m going to leave you with a powerful quote from the book—and something we all need to keep in mind:
“Your disease, regardless of how common its prevalence, is unique. Remember this often. Healthcare shouldn’t take a one-size-fits-all approach. Don’t assume that your problems are the same as someone else’s and can be “fixed” in the same manner. Neither is true. Your problems are yours and yours alone. That’s something to respect. Celebrate your individuality. One of you is all this world can handle, because you’re awesome. Remember that often, too.”
You can check out and purchase Ricky’s book by clicking here.