Living with a chronic illness has more responsibilities than I ever imagined it could. Sometimes I actually feel trapped and overwhelmed by the never ending cycle of things to do and remember. I’m fearful that I might forget something super important that I need to do or miss a dose of meds or add a supplement that interacts negatively with one of my other meds. I wasn’t always like this though. At the very beginning of my journey down the path of the chronically ill, I actually thought that my doctors and nurses would take care of everything and tell me what to do. I thought I could just sit by idly and wait for instruction or treatment. I didn’t take any supplements that my doctor didn’t recommend. If he didn’t tell me that it was ok to workout I assumed that it was bad. If he didn’t ask about a symptom that I had I assumed that it must be unrelated. I was under the impression that he knew me and my case better than I did. I mean, he’s a medical professional. He obviously knows what’s best for me, right?
I told myself that I was sick and didn’t have the time or the energy to also be my own doctor and medical care coordinator but I quickly learned that if I didn’t do it, no one else would either.
When dealing with a chronic illness, life lesson #1 is that if you don’t stay on top of your care, chances are, no one else will either. Unless you have a caretaker capable of and willing to do it for you, you have to become your own advocate.
Maybe I just have a shitty doctor. Maybe I’m a shitty patient. Either way, I have come to learn that it’s my job to tell my doctors or nurses what I need or want. I can’t expect them to read my mind or know what questions to ask. I can’t expect them to remember every single little procedure or set-back that I had. I have to be up front and honest but I also have to be pushy sometimes. If I’m supposed to come back in 3 months for a follow-up, but reception schedules me 5 months out because there are “no available appointments” sooner, I need to demand that I be put on the cancellation call list for first available. If a medicine that I’m taking has unpleasant side effects that I have decided I can’t live with, I need to speak up and request something new. If I don’t think that the fatigue meds are working as best as they can, I need to ask about other options. If I need accommodations at work and don’t know where to start, I need to ask my doctor for suggestions. As much as I want it to happen, no one is going to hold my hand and lead me down the path that’s right for me.
Being your own advocate is tough though. You have to keep track of what you asked for, when you asked for it, and when you’re supposed to get it. You have to know what procedures you had when and if you’ve met your deductible and/or out of pocket max when you check in for that MRI because if you haven’t, you’d better bring $700 with you or risk being turned away and having to reschedule (which = more time off work). You have to make an appointment with your primacy care physician in order to get your Rx for the sedative you take during the MRI refilled. You have to know what meds you’ve already tried, what the side effects were, and what dates you took them. You have to remember to update all of your doctors and medical care providers whenever your insurance and prescription coverage changes. You have to stay ahead of the ball so you’re not left with a lapse in coverage or treatment. You have to spend time on the phone with billing departments when they fail to update your insurance and send you a bill for the full amount because your old insurance company denied the claim. You have to document your expenses and keep track of balances to be sure you’re not overcharged. It’s endless. All of this with a brain that can’t multitask as well as it once did and a memory that isn’t as good as it once was.
I used to have difficulty asking for what I wanted or needed but I’m analytical by nature and it didn’t take long for me to realize that something wasn’t working as well as it could be. Before you get frustrated by the whole thing and write off all doctors and medical care professionals as a bunch of quacks who don’t care about you, try becoming your own advocate and see how it works out.
I have listed some of the techniques that I have found to be most beneficial to me in my self-advocacy efforts below. Feel free to add your own in the comments.
- Become an expert on your insurance coverage and actually read your bills. If you don’t understand something or don’t see a previous payment, call the billing department and ask questions. Don’t assume that your insurance and the provider got everything 100% correct because that’s not always the case.
- Keep your own medical records. I know that it sounds ridiculous but do it. Each time you have a procedure or an appointment or start a new med, log it in a simple spreadsheet with some notes and the date. It will come in handy down the road when everything starts to blend together. When you get an MRI, ask for the images to be burnt to a disk. If your doctor offers electronic charting, sign up and export records elsewhere so that you always have a copy.
- Do your own research, and by this, I don’t mean Google every symptom that you have. Join support groups on social media and websites that address your specific symptoms or medications and read about others’ experiences or ask questions. Join national research foundations or organizations related to your diagnosis and read their scholarly articles. Read up on clinical trials and new medications. Subscribe to news feeds related to your diagnosis. Become a near expert on what’s been done, what’s trying to be done, and what your options are.
- Ask questions. If you don’t understand the answers, ask more questions. Make a list and bring it with you to each appointment. Ask every single question on the list. When you whip out the list, your doctor will know that you have specific concerns and that they were important enough to write down. He/she will likely take more time to address each one. I’ve had 30 minute follow-ups last an hour because we weren’t done with the list yet. Your appointment is your time with your doctor. Use it to your advantage.
- Lastly, get a second opinion. Get a third or a fourth too if that’s what you want. Don’t be afraid to upset your doctor. Any responsible doctor will understand your desire to seek another option and shouldn’t hold it against you. If they do, it’s time to get a new doctor.
I hope that these suggestions and/or my perspective has helped you understand just how important it is to be your own best advocate. Seriously. There’s no one better.