Topics: chronic illness, healthcare

Several years ago I wrote an article that was published by The Mighty about how each illness comes with its own unique set of burdens. While medicine and doctors have come a long way, sometimes the best way to truly understand our bodies is good ol’ fashion connection. We want our hand held by someone that doesn’t just medically understand our illness, but who actually lives with it too. There is a special comfort that comes from someone saying, “It’ll be OK. This is how it’s going to go, and this is what you do when it happens.”

Over the past month, I have been asked by four separate groups of people similar questions. Their lives have gotten caught up in the hellish merry-go-round of healthcare, and it’s scary. New. Overwhelming. Anxiety-inducing. Expensive. And they want to know: what are my best tips? 

Don’t worry. I got you. I’m not gatekeeping the Goldfish crackers. We can handle it. Fair warning, it’s going to take more than one essay to cover everything. 

If you’re sick, someone you know is sick, or you just love lists and links, let’s go on a journey of how to be sick. Full warning and disclosure, I am not a healthcare professional and am NOT giving medical advice. These are anecdotes from personal experience of what is helpful once you’re on the merry-go-round.

Lesson #1 - Organization and Care Team

• Medications will overtake your life. When can I refill it? When will insurance pay to refill it? What pharmacy offers the best price? What pharmacy has the best hours/staff? I use a spreadsheet to keep my medications organized and on a refill plan. I also only ever use one pharmacy when possible. This helps create continuity of care—my doctor’s office and my pharmacist are on the same page. The columns in my spreadsheet are: medication name, generic name, dose, frequency, provider who prescribes it, brief description of what it is. I also make and tape labels to the top of the Rx bottle so it’s easy to remember what is what. Because “nitrofurantoin” isn’t as helpful of a noun as “antibiotic” is.  

• MyChart. Download the app. Learn it. Use it.

• It’s good to keep someone on your team with a wider view. For me, this person is my primary care provider. Over the years, my touchpoint has changed. At different times it has been a PA, nurse practitioner, physical therapist, and LPN. In my opinion, this individual’s medical background isn’t as relevant as their personality and candidness. Find someone you see face-to-face a few times a year that you feel comfortable asking for clarifications, recommendations, and about the little things that pop up. Having someone tell you, “That’s a side effect of XYZ medication,” or “That needs to be brought to the attention of your doctor,” is a reality check that we all need. Plus, people behind the curtain know all the scoops. They can tell you who is amazing at their job and who is, well, not. This is primo information that Google cannot offer. Find. Your. Touchpoint.

• Speaking of Google, know where to look for information and how to interpret it. For example, WebMD is not great. However, Cleveland Clinic, Mayo Clinic, and NHS all have great websites. I even like to use—wait for it—Wikipedia. At the bottom of the page are references for the information presented. If I can find the citation, I can usually find the medical journal or research institute that originally published the research. Princeton University Press articles found via Wikipedia are still legitimate sources (despite what college professors may tell you). Be your own best sleuth by knowing where to look.

In part II we will be going through the Oscars of chronic illness. 

And the award goes to…come back to find out!