Category: epatient

It’s really hard to be a patient. There are many things that we have to deal with, physically, emotionally, and mentally. When we’re facing chronic illness issues that could have us afraid, it’s even worse.

One way to help yourself is to become an engaged patient in your own care. It’s easy at times to paint a picture of someone who is an engaged patient like Britt from Hurt Blogger. But if you don’t know Britt, it may not be as easy to paint that picture.

Below are 11 mistakes that patients can make. This is not an exhaustive list, nor is it in any sort of order. If you’re looking to be engaged in your care, these are issues you’ll have to work on tackling.

Not disclosing all information

When we go to the doctor, it’s easy to not disclose certain things. Maybe you had chlamydia in college that’s been cleared up and you don’t think anyone needs to know about it. Diseases or issues – even when cleared up – can still have after effects and all sorts of similar things, so it’s important to disclose these issues.

Likewise, if you had a really bad cold and you practiced religious healing or drank 10 gallons of honey lemon tea and ate hot chili to get rid of it, let your doctor know. If you get a lot of upper respiratory infections like colds, it could mean something important.

Avoid this by sharing things with your doctor! Certain things, especially pertaining to sexuality and intimacy, can be difficult to share. We live in a Puritan society still in many ways. That combined with having a disability makes us feel as though we shouldn’t be sexual beings. Docs are there to help you, though, so please discuss everything affecting your life with them.

Downplaying or exaggerating symptoms

One of the issues I ran into when getting diagnosed with fibromyalgia was that my doctors didn’t realize how badly the pain was affecting me. Without emphasizing that, they didn’t realize some of the symptoms I had were connected.

Likewise, exaggerating symptoms of the abscess I had (that my PCP at the time thought was a pimple) led to me being laughed at and some harsh notes in my chart.

To fix this, make sure that you highlight the impacts symptoms or illnesses are having on your life as well as any fears you may have. If I had gone over my fears about the abscess, perhaps my former PCP would’ve treated me a little better.

Not following up

Have you ever had an appointment where you’ve been asked to follow up and you just didn’t?

Don’t do that.

Following up allows your care team to see how things are turning out. Sometimes we may have a side effect to a medication that we don’t realize is one… because we haven’t reconnected with our doc!

At the very least, send/leave a message with your care team to let them know how you’re doing.

Not bringing up big issues in your life

While I did change rheumatologists, I really do value the care I received from the nurse practitioner Kathy at my last office. The doc didn’t often have that much time for me, but Kathy always did. I cut contact with my mother in the middle of planning my wedding, moving, meeting my dad, and my sister moving to the other side of the country. Any one of those things is a big deal and can affect our lives in a huge way. Kathy was great in that she always asked about these things.

I needed help and didn’t really have time to meet with a therapist. She followed up with me and checked in with me during the wedding planning process and everything.

That’s how my new care team is.

That is how your care team should be. If they don’t ask these things, bring it up. Say “Hey, I know this may not be important, but I’m having a lot of drama in my family and it could affect my disease.” That can lead to a conversation about lowering stress, boundaries, and could lead to a therapist appointment.

The biggest thing you have to learn is that you matter and, therefore, your opinion about your care matters. In fact, it can be the most important opinion there is. After all, you’re the one stuck in your body. While a doctor may know how the body works, you know how you feel.

Learning to be your on advocate or a partner in health care is what the ePatient idea is all about. The idea of a patient as a potential expert and someone who should be involved in their care is growing in popularity but still hard for many to wrap their heads around.

In the past, health care has been paternalistic – rules by a lot of old white guys who, in their white coats, tell you what to do and you follow their instructions. You don’t ask questions and you don’t stray from the path – at least, you don’t tell them you have.

Now it’s all about working together, with the patient as a part of the team. There are usually two ways this can go – shared decision making (SDM) or informed decision making (IDM). Neither is better than the other in general, as their success really depends on what type of person you are and approach you want to take.

Share decision making is where you and your health care team would review options and make a decision together. There is back and forth and a discussion.

Informed decision making is where your health care team presents options along with information about each path and you choose one that might best fit your life.

In reality these two are very similar to each other. Again it really depends on your personality. If you like to be a little more guided or work on a team, SDM may be better as you’re not the only one really involved in the decision. If you’re very independent, IDM may be better.

I prefer a shared decision making process. As a rare disease patient, I have become an expert in my own diseases and how they affect my body. My current rheumatologist recognizes that and we speak much more like equals than a top-down approach you might get in other scenarios.

Something else that I love about her is how involved she is in the greater rheumatology community. She’s active with the local chapters of the Lupus Foundation and Arthritis Foundation. She’s also SUPER STOKED to see what I’ve just learned from the JA conference and what I will have learned from MedX after September.

What type of decision-making process do you enjoy? Have you tried multiple approaches?