Navigating an Illness
Before I got sick I didn’t have a ton of experience with doctors, but over all of my years working with them (I’ve seen 11 different doctors!), I’ve learned quite a lot. While I was diagnosed 13 years ago, the onset of my illness started almost 15 years ago to the day of writing this post. Throughout the years I’ve had good and bad experiences with doctors, their administrative staff, and labs. While I hope no one has to deal with a chronic illness, unfortunately most of us will be personally affected by something like this, either through your own battle or through someone you love. Below are a few tips that I hope will make things a little easier if you’re getting started working with doctors to resolve a chronic illness.
- Find a doctor who listens to you
I’ve had many, many doctors who have been dismissive to me in one way or another. One told me the pain was all in my head and that I needed to just accept it — to this day I still remember that so vividly. At the time, I was dealing with unrelenting pain after surgery and all I could do was cry in the parking lot of my worksite, so defeated. Thankfully, I soon found a doctor that listened to me and made me feel heard. The point is: don’t be afraid to switch doctors. Don’t put your life in the hands of someone who doesn’t believe you. You know yourself the best. Always listen to your gut. If you really feel like something is wrong, don’t give up. - Keep your records
Always ask for a copy of any test results. Take notes of all the tests and medications you’ve been on. This will be helpful if you have to move from doctor to doctor. Your file may be 6 inches tall but it will save you so much time and effort trying to get another doctor up to speed on your case. Also, doctors can sometimes mix up records or misremember symptoms or treatment protocols, or even what they told you on the phone, so having your own records comes in handy if that happens. - Find a healthcare advocate
I think it’s so helpful to have someone that can help advocate for yourself, and in my case my Dad has been the biggest support for me with my illness. He does his own research, he and my mom have gone to many appointments with me, he is a sounding board when deciding which treatment to start, and he has helped contact people for me when I’ve been too sick to do it myself. And he has been there from the beginning so I don’t have to explain everything to him, which is a relief when I’m feeling sick and just need help. - Build a support system
In this regard, I’ve been extremely lucky throughout the course of my illness. My Mom and Dad have been there every step of the way. My husband, sister, and best friends are there for anything I need. I know not everyone has the support of family but if you have a best friend that is willing, their support is so helpful when you’re struggling. I have a hard time accepting help and for the most part tend to manage things on my own, but knowing I have that support behind me helps me immensely. - Take notes
This applies to both in- and out-of-office doctor appointments. Taking notes on treatment plans as you’re discussing them with your doctor is important so you don’t forget what medicine you’re taking and when. And when you’re at home, taking daily or weekly notes on symptoms, daily diet, sleeping patterns, and stress levels can be incredibly helpful for the next appointments you have with your doctors. - Find online support
These days, there are tons of online communities for any and all kinds of illnesses. Join one and start reading posts. Sometimes you can learn about a new treatment or you can just find similar stories to yours and not feel so alone. - Do your own research
I know Google gets a bad rep sometimes, but it can actually be helpful once you have a diagnosis to work with. Sometimes my doctor will give my options for different tests or treatments we can try. I can use the internet to research them, read about success stories, understand potential side effects, and ultimately feel like I have some backup for the course of treatment I end up taking. - Trust your gut
Yes, good doctors know what they are talking about — they see patients like you all day. But this is your life and your health. If you’re feeling like one treatment isn’t working for you, speak up. If your gut tells you that a treatment plan or diagnosis doesn’t feel right, don’t ignore it — look for a second opinion, do more research to better educate yourself, and don’t hesitate to speak with your doctor about the concerns you have. - Don’t underestimate the importance of your diet
I know that there is a time for modern medication and I have taken my fair share of them. But don’t forget the very basic consideration of the food and nutrition you are putting in your body on a daily basis. Inflammation is such a huge part of many illnesses, and it can be exacerbated by your body’s reactions to foods you are allergic or even just intolerant to. Be aware of what you’re feeding yourself during an illness. And if you can, find a doctor that believes in the healing powers of food as well. I don’t believe I’ll reach remission on a healthy & nutritious diet alone, but I know that it plays a major part in my body’s ability to heal itself. - Don’t lose hope
Your mind is an incredibly powerful tool. Don’t let yourself get so discouraged that you lose all hope. Find the good parts of your life, even if you’re struggling. You don’t always have to be okay and you don’t have to always be happy, but try to find the happiness in the little moments. If you can’t seem to find any hope, try to rely on those around you to lift you up. And remember, you are not alone.
