I have spent the last few weeks buried in paperwork of various forms. Most of it has involved preparing for my disability hearing later this year. But as I went through all my records finding the ones that show my situation best, I realized there are a lot of reasons it’s important to keep good records. Like how taking notes at the table can help you remember the name of npcs or figure out puzzles easier, I found 10 ways that keeping good health records improves your life when you live with a disability.
1 Helps With Bureaucratic Nonsense
It’s no surprise for anyone who lives with a disability that there is a lot of bureaucratic nonsense that goes along with being constantly sick. Between keeping track of test results, getting insurance coverage, or even filling out forms for the government, a lot of our lives are under scrutiny. While frustrating to keep all the details straight, especially for those of us who are neurodivergent, it’s also important to produce a receipt for a medical purchase or show when our last seizure happened. It’s an unfortunate side effect of disability that we have a bunch of bureaucratic nonsense to deal with that a common, healthy person doesn’t need to keep track of. Having the information handy helps you when those pesky forms or interviews come up.
2 Allows You To See Trends
I started a lot of my medical records because of cognitive-behavioral therapy to improve my functional neurological symptoms. When I got the symptoms down on paper, I started noticing trends. When I started seeing my dietician, I noticed how my frequent failure to eat lunch led to a crash of energy that often needed a nap to resolve. I noticed I had a critical period when my Adderall was wearing off where I would struggle if I wasn’t prepared for it. When we keep good records, we can help see some patterns around our random symptoms which empower us to improve those patterns for better outcomes. While we may not feel 100% better, understanding those patterns helps us get every bit of improvement we can.
3 Highlights Your Efforts
This point ties in loosely with the previous point. When we track our health, we can see connections between stimuli and random symptoms. However, when I started my sticker system in my planner, I did it to figure out my upper limit for pacing. I used stickers to track all the activities I was doing. What was most surprising, I found I did a lot more in a day than I gave myself credit for. I would feel like I got nothing done and then look over my records and find several stickers that showed I did more than I initially thought. Our brains can discount our efforts if it feels too mundane or if it’s something we do often. When we look at the things we did in reflection, we often find we have more to be proud of than we initially thought. When you stop discounting what you are doing, you can start measuring your progress against where you are instead of where you used to be.
4 Reveal Potential Tools
I have always been terrible at drinking water. Over the past couple of years, my heart rate became a concern. My doctor advised a bunch of techniques to improve my heart rate and some of those techniques helped. I then went to a writing conference where a doctor talked about how people die to write death more believably. I don’t believe she intended it as medical advice, but she brought up a point of how dehydration can make your beats per minute higher because you have less blood to pump through the body. It was a simple point, but it led me to push to get closer to 8 cups of water per day. By making the connection between my poor water habits and my high blood pressure, I could add more water to bring my heart rate down. While it isn’t perfect as I still struggle with water, it’s been a revelation I would have never had before keeping records. And to be honest, I wouldn’t have been able to see how successful it was or wasn’t without the records I keep.
5 Makes Doctor Visits Easier
I frequently forget about my premenstrual dysphoria disorder (PMDD). It roughly translates to I get every symptom of PMS and pregnancy between when I ovulate and the first day of my period. With everything I have seen online, most women have to deal with multiple months of tests and visits to get diagnosed. This was not the case for me. I was diagnosed within a month because I was keeping health records for another purpose. When you keep good records, it allows for you to show doctors trends you notice in hard numbers (which most of them prefer). This makes diagnosis easier all around and gives you fewer office visits where you want to pull your hair out as you feel interrogated the entire time and fewer negative side effects from treatments that aren’t right for you as the doctor is guessing at what is happening. I know I’d be happy to never be on Prilosec ever again, as that’s my most common prescription that I don’t need for many wrong things.
The other aspect of this is a phenomenon that has been studied called “white coat anxiety”. This largely has to do with things that are anxiety related, like blood pressure. It boils down to the doctor’s visit is stressful enough to your system to skew the results a doctor may get. Keeping your own records allows for you to collect data at home without the pressure of what the doctor thinks. I find some of the best information come from sources like apple watches and Fitbits that track your heart rate all the time and can give a powerful picture of what your heart normally functions like.
I mentioned this in the highlighting efforts portion, but keeping these records is vital for figuring out what pacing works best for you. I had mentioned before that I use a sticker system to keep track of my activity. What I hadn’t covered before is that I’ve found a 12 sticker limit to any given day and that on 12 sticker days, I’d be paying for it for a few days. What each of these stickers represents is based on my personal findings of what makes sense for that 12 sticker limit, but when you track how much you do, you can get an idea of how much you can push yourself to do. This is significantly harder if you aren’t sure of your limits. Keeping track helps you identify your limits and when you have pushed too hard (because it’s often worth it to push for some things). I plan on doing a post on pacing at some point so if you want to know more about it, keep an eye out for the post or keep an eye out for the allies page where some other disabled creators can explain it to work better for you.
7 Emergency Planning
A lot of us don’t want to think about emergencies, but if you live with a disability, having a plan in place if your symptoms flare up can be fundamental for actually taking part in life. When we know what can trigger our symptoms and what things help us when our symptoms are worse, we can set up plans to entrust to others for when those events happen. For instance, I have seizures when I overdo it or become too tired. The people I am with know that I have a few kinds of seizure auras that normally proceed a seizure. Those auras all require different things and I can usually talk through it, even if it’s a little harder. As a result, my emergency plan has them ask me what I need. If I get the rare seizure without warning, there are also steps that they take to make sure I don’t hurt myself. Because I understand what normally happens and what the outliers look like, I can plan for those worst-case scenarios so I can experience things like soccer games or parties without worrying about bringing the party to a halt with a seizure or ending up with a costly ambulance bill that was really unnecessary.
8 Goal Setting
We are heading into NaNoWriMo season as I’m writing this. This is a big writing event where authors will be more social in their push to write 50,000 words in November. In the past, I have taken part and even won the event as I got over 50,000 words in the month. While I have a project I am excited to take on, I’m going into this year’s event with my own personal goal. Because I have kept such good records for over a year, I feel confident in what I can do to push towards a goal and what goals are completely unrealistic for me. I can’t do 50,000 words in November. I don’t have the energy to string that many words together for so long, day after day. Instead, I’m pushing myself to do 50,000 words between now and January. While this is still taking me out of my comfort zone, it’s a goal that is more aligned with my limitations. But last year when I didn’t have these records, I tried to do NaNoWriMo to see how far I could go and ended up failing spectacularly. When we allow ourselves to work with our limits, we can do a lot more than we initially expected.
9 Stay On Top Of Medication
I separate medication into its own section because while it covers aspects of other points, there are some points that are unique to medication itself. As of writing this, we are in a national Adderall shortage, where many people with ADHD are struggling to get their meds. Add onto it local requirements to get Adderall, such as a visit with a doctor once every 3 months and you can see how medication that we rely on can be impossible to get. Add onto it drug interactions like how Adderall shouldn’t be taken with cold medicine and you can see how complex the medication you take can be. I ignore notifications that many of my medications may have negative interactions when I log I took my meds on my phone. I am on multiple depressants because of an overactive sympathetic nervous system, and while there are certain risks, I’ve been told to watch out for. I am in the care of multiple doctors who are closely monitoring how the medications are working and even how they interact with each other. When you have health needs that don’t look the same as the bulk of the population, it becomes important to pay attention to different things than when you have a healthy body for medications. By keeping your own records, you can note concerns to address with your doctor and dismiss the things that are true for 74% of the population but don’t apply to you.
10 To Help Your Family
We all likely have had doctors ask about our family’s health history to find out about our own risks for certain things. If your family is like mine, you may know there are some health concerns, but it is hard to say exactly what they are. When you keep your records, you can tell people in your family what conditions you have with a genetic component so their doctor can know it. You can make it clear to your family what you want to happen if you aren’t able to make that decision yourself. When you keep records, your family can look at what you had been working on when the emergency happened and fight for the most appropriate care for you. This allows your family to take power for you in emergencies and make sure you don’t slip between the cracks.
These are my 10 reasons it’s important to keep good health records. Can you think of any I missed? Which was your favorite? Let me know in the comments below.