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.
Not tracking factors in care like pain or side effects
Your doctor isn't with you every day. They don't live inside your body. You have to do a little work at a minimum to help with your care.
A great way to do this is to track your pain levels and what tasks you find hard or easy. There are some great apps out there that can help. I've talked a bit about Arthritis Power before so check out this link to learn more.
Myra is another great app developed by Crescendo Bioscience to track rheumatic disease symptoms. It tracks your joint pain, morning stiffness, fatigue, daily functionality, medications, labs, and also gives you the big picture summary of it all. It's pretty great.
I use both of these apps to track how I'm doing. It honestly really helps me check in with myself. Sometimes it gets me focusing a little too much on the pain, but it happens right?
Some people use excel to track their symptoms and meds and side effects and all sorts of goodies. Do what works best for you and fits in well with your life. For me, apps on my phone really help because I'm on it more than the computer when I'm home.
By tracking your symptoms and the like you'll be more prepared for your appointments.
Not preparing for your appointment
Life is super busy. It gets hard to keep track of everything we're doing sometimes. I'm really decompressing finally from meeting Emily and the JA conference and I already have to start thinking about MedX!
There are always going to be times where we aren't quite settled down enough to accomplish everything we have to do. That means our appointments may not be as helpful as they could be. Docs have this happen too, trust me.
Tracking your symptoms will really help prep you for your appointments. Other things you can do are keeping a diary or taking pictures and writing a short blurb or just making a note about how you felt on your calendar. Bring those things in so you can discuss them. It helps the appointment go more smoothly but also really helps your doctor know you're engaged and dedicated to your health.
Oh medications. Medicine. Good ol' pharma.
I hate taking medicine. The fact that I'll have to keep taking it until the day I croak doesn't help. I have had times where I just need a break from medicine. Early in March was one of those times. The fact that I rushed to California for Sam and my sister gave me an excuse to keep that up. I saw my rheumy shortly thereafter and my labs were gross, but I felt good, so we kept up with not keeping up with my biologic...
And then came the flares.
This was the first time I was 100% honest with my doc about the medicine issue. I just needed a break from the side effects and it didn't feel like it was helping much. Now that I did my last Cimzia shot, I can say that it aggravates my fibromyalgia too much to really help with Arthur. It sucks big time.
The point is that being honest with my doc allowed us to start looking at other meds early, before I needed them. I got comfortable with the idea of a new med and we figured out when to start it due to my busy traveling schedule this year.
There are certain meds I just cannot stop, and probably never will be able to. I can't imagine what would happen if I forgot a Lyrica dose right now. Holy crap. BUT that also helps me be on top of refills and other things related to those meds.
The fact that I use Pillpack really helps too!
Seeing the wrong doctor
This can be really hard for chronic pain patients. Sometimes I don't know if the issues I'm dealing with are rheumatic in nature or a new thing, so I don't know if I should see my rheumy team or my PCP.
One great thing that can help with this is sending a message via my EMR to my rheumy. That team is friggin' amazing at helping me out with this stuff.
So when in doubt, ask.
Not paying attention
It can be really hard to pay attention in a medical setting, especially if it's emotionally charged. Here are some ways to fix this problem.
Bring someone with you! Bring your mom or spouse or best spoonie friend along to discuss what you're going through. It helps to get an agenda set up at the beginning of the appointment, listen throughout, and summarize too. Having someone else there can help.
Most docs now have to print an after-visit summary, which can be helpful as long as you ask for them to be detailed in their summary.
Not knowing anything about your illness
Honestly this one bugs me the most. I know others with Still's who don't really know anything about the disease or the treatments. This can create a paternalistic environment where your doctor controls everything and you may not have much of a voice in your care. This can frustrate docs too. They have a required number of patients to care for and sometimes being so involved with one patient gets to be really hard.
You certainly don't have to go as far as I have with checking out medical textbooks from work and learning clinical immunology in your spare time... but learn. Check up on lab terms you don't know or read some medical studies about your illness and meds. Learn how to spell the medications and what the common side effects are.
Of course there are always great places to ask questions when you don't know or can't find the answer. It's important, though, to recognize that as a patient you are an expert in a part of your care - what affects your body and how you feel. That counts for a lot, so get involved.
Not engaging in care
This goes along with the section above a lot, so there may be some repetition here.
When my rheumy and I initially talked in October, I brought up Kineret. I wanted to start it or another one of the FDA approved SJIA medications but my former rheumy team wouldn't do that. My current rheumy was astonished that I'd not been on those at all. We decided that would be a goal once I failed Cimzia.
I recognized I was failing Cimzia and held the med to see how I would feel. In doing the most recent shot a few weeks ago, I know this isn't a medication that helps me more than it harms.
We discussed this via MyChart once I had asked for a boost of prednisone, and she sent me some journal articles. I did my own research too and felt most comfortable with Kineret over Actemra and Ilaris.
We discussed when would be the best time to start this drug as the JA conference was approaching. We decided together that I would do this last Cimzia shot to hold me over and start Kineret once I'be gotten back. We came up with a schedule for labs to see how that helps and decided to check in with each other via MyChart.
Engaging in your health care is incredibly important. It's your body and your life - you need to figure out what works with it. You also need a doctor or care team that gets that. I'm lucky that my doctor right now does.
The idea of patients engaging in their own care is gaining more and more popularity. More health care systems are emphasizing this via their quality and compensation measures. That doesn't mean all doctors are subscribing. If you find a doctor that's still more into his white coat than taking care of you, get out! Make a call to docs in the area. Use Health Grades and other rating sites to find docs to check out. Treat a new patient exam like an interview.
Again, you live in your body. You're the expert on your allodynia and other pain. You know how medications put you out of it for three days - and when you can't handle that. Take control of your health!
Just, um, don't take my spoons.
You know what isn't a mistake? Joining me on my MedX journey Sept 24-27! I'll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.