One of the trickiest things about chronic illness management is just how much stuff there is to do. And it’s not one size fits all! Sure, there are some things that are common across illnesses, but by and large, you have to try things in order to figure out what works for you, your body, and your illness(es). The 5 things in this post will help you navigate managing your chronic illness, whether you just got a diagnosis or just developed symptoms.
I am not a medical professional; please speak to your doctors about implementing things in this post. Additionally, this post contains affiliate links. Thank you for supporting Kate the (Almost) Great™!
Chronic Illness Management: 5 Things New Patients Need To Do
That being said, the tips and tricks in this post are very general. They are designed to help you navigate your new world. There are more specific examples in each section – especially in each how portion – but it’s they are general on purpose.
Learn How To Research
Why you should research
Your basic knowledge of your chronic illness should come from people with a medical background. Now, if you’ve been symptomatic for a while, you probably know several medical professionals who don’t seem to know their specialty very well (I know I do). So don’t take everything every professional says as gospel.
But an amazing thing about being in the 21st century is the incredible Internet. Google your illness and read websites like WebMD, the Mayo Clinic, the Cleveland Clinic, advocacy groups, and more. And make sure that, if they’re not a big reputable site like those, they link to their sources.
The gist here is that you should make sure that you have correct and up-to-date information. New things are being discovered all the time, and you want to make sure that if you believe something discovered or announced in the 1960s it’s still true today. Misinformation happens by accident just as much as it happens on purpose.
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How to research
Start with a simple Google search and see what the first page results are. I advise starting with your condition in general – such as “rheumatoid arthritis” – and then narrowing it down once you figure out what you’re most interested in learning about at that time – such as “rheumatoid arthritis treatments.”
I recommend not using the AI summary, though. The problem is that the AI summary sometimes says the exact opposite of what the source it’s relying on says, so if you’re going to repeat it, make sure that you’ve clicked into the source and read it from there.
This also brings me to my next point about reputable sources.
Anyone can say anything on the Internet, including me. That’s why I cite my sources, usually marked by (x) with the x linked. I have a plugin that helps identify when a link has broken, so I can update it, which I try to do in general, but especially when it’s a citation.
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Here are some questions to ask yourself about a source:
- Does this site have a reputation for honesty?
- Does this site have a reputation for being on one side or another of politics?
- Are there consequences if this site is wrong?
- Do they link to sources with their information? It doesn’t have to be for the information you’re using, just in general.
- Do they quote medical professionals?
What you’re trying to figure out with these questions is if they have a reason for sharing information that might not be accurate. If they do, then you shouldn’t use them.
But, again, misinformation happens by accident. When you’re looking for something as important as information about your condition, you should check multiple sources for the same information. For example, I take Rituxan for my rheumatoid arthritis. Multiple sites say a) it is prescribed for RA, b) it’s a form of chemotherapy, and c) it’s an immunosuppressant. This shows that this information is true or a LOT of people have gotten it wrong.
Posts to read
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Track or Journal for Understanding Your Chronic Illness(es)
What this means
This could be extremely detailed, like a diary of what you do in a day, or more simple, like a record of your pain levels over the course of a day. It could be handwritten or with an app, such as Bearable.
Why you should do it
Annoyingly, many medical professionals tend not to take patients at their word unless there is concrete data. Keeping a record can help your medical team take your more seriously. For example, I once kept a record of how much I slept, how much time I spent commuting, and my fatigue levels. This helped my medical team understand me when I explained how intense my fatigue had been getting.
It can also help you concretely identify if a new medication is working. After all, there’s a reason the phrase “see the forest through the trees” exists; it can be difficult to identify just how much something is helping you (or not).
Another reason why you should keep a record is to help you understand what’s triggering your body, such as the foods that might be contributing to your symptoms. In this case, you would keep a diary of what foods you ate, as well as the intensity of your symptoms that day. This can be helpful for someone with a form of IBS – noting how your diet impacted your symptoms – or with another form of chronic pain. A lot of non-IBS patients can experience pain due to certain foods. For example, gluten, dairy, corn, and soy make my RA and fibromyalgia pain much worse. These records can be helpful for a variety of conditions and reasons.
How to do it
The point of tracking your symptoms is to see patterns and figure out what could help or increase your symptoms, so it’s SO necessary to do it for at least a week. When you update your tracker or journal will depend on what you’re tracking, but it’s easiest to keep up with it if you set a specific time of day to do it. For example, if you’re tracking sleep (or lack thereof), it makes sense to do it immediately after you wake up. If you’re tracking activity and pain, it makes sense to do it at the end of the day. Whenever you do it, it’ll be easier to stick with it if you do it generally at the same time every day. I especially advise setting an alarm or reminder on your phone to remind you.
As I mentioned, you can use an app or a paper journal. It doesn’t have to be super detailed, but it can be. I recommend picking one thing at a time to track, if only because that will make the process easier to stick to. If you’re a brand-new patient and have no idea where to start, here are some things you can track:
- Pain and sleep, stress, fatigue, activity, etc.
- Your primary symptom with the food you ate
- Pain and different types of activity
- Heart rate and activity
- Your temperature and pain or sleep
Posts To Read
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Analyze Your Symptoms
Why you should do this
Simply being aware of your symptoms isn’t enough when you live with chronic illness; you should also be analyzing them. This is for a few reasons. 1) If you are able to prevent or reduce your symptoms, it would be great for your life if you could. 2) Doctors don’t know everything! You shouldn’t rely on them to interpret your body. Some of them don’t know enough about what you need them to (because the human body is wild) and some of them are annoying and will just dismiss you/your symptoms. 3) It can take a while to actually see a doctor, even if they are helpful.
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How to do this
Take the records that you’ve kept from and take a good long look at them. What trends are popping out? What is especially weird?
If you started general and aren’t sure what to make of your notes, go specific. Being more active caused more pain, but what if you changed the type of activity? Instead of running, try the elliptical, a bike, or pilates. A burger upset your stomach, but is a gluten-free burger okay? How much sodium does your body need per day to function better?
You can also apply a version of the scientific method; if something isn’t an obvious trend, but it is suspicious, test it. Did you feel more symptoms when you walked longer than usual? For me, I can’t be too active due to my RA, but if I’m not active enough, my fibromyalgia gets upset.
And if you’re like me, just trying to find patterns in your symptoms will help your mental health because it feels like you’re doing something.
Posts To Read
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Develop Your New Normal
What this means
Unfortunately, for most patients, your life is going to look very different post-illness than it did pre-illness. That’s just the way it is. They could be small changes, like just adding medication, or they could be large changes, like completely altering your life to accommodate your symptoms, medications, diet, appointments, and more. You are absolutely allowed to grieve your old life, but at some point, you need to focus on what your future is going to look like and the changes you need to make so that can happen.
I’m never going to be someone who works out multiple times a week, but I can try to walk a certain amount and do yoga every now and then.
I’m never going to be someone who can work 40 hours a week. But by figuring out the tips and tricks for my body and life, I can work 36.
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How to do it
This is going to vary wildly by person. But what I would advise everyone to do is make a list of the top 3 things from your pre-illness life that you desperately want to keep and focus on those things. Depending on the illness and the person, you might not be able to keep your favorite things from your pre-illness life. But if you focus on a couple of things that matter a lot to you, then you can keep the most important ones.
I also advise that, if you have the healthcare that supports it and you have the financial ability, you should see a therapist, at least for a little while. It will take some time for you to adjust and you need a safe space to work through your feelings. And there are therapists who specialize in chronic illness! Psychology Today has a great website to help you find a therapist by specialty. The right therapist can help you navigate your new world.
Posts To Read
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Find Your Own Chronic Illness Hacks
Why
As I’ve said, what works for one person won’t work for others. This is true not only for symptoms but also life. My biggest health hack is that when I refill my pill boxes, I do 3 at a time so that I don’t have to do it every single week. A big blogging hack is that I set a timer for myself (15-30 minutes) and I only write a post during that time instead of being distracted by games on my phone or watching a show.
Maybe you meal prep. Maybe you take 1 vitamin C + D instead of 2 separate vitamins. You need to do what works for you, whether it be to save time or to help you do everything your body needs you to do.
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How
What is something that takes a lot of time and/or increases your symptoms? How could you improve that?
The reason I started to fill multiple pill boxes at a time was that if the box was full I took my medication correctly, but then every week I would have to refill them and wouldn’t take them correctly for a day or three. I went up to filling 3 boxes at once from 2 because I didn’t want to deal with filling them every other week.
When I went from taking medication twice a day to three or four times a day, I started setting silent alarms on my phone to take them. I’m so used to it now that I don’t need those reminders anymore, but it was really helpful when I got used to taking medication more frequently.
I started meal prepping – making meals for a week at a time – because it saved me time during the week, especially since I can’t truly predict how I’ll feel in the future. It also makes sure I eat healthy, no matter how much fatigue or pain I have.
Here are some examples of hacks:
- Refill multiple pill boxes at once
- Set screen time limits on your phone
- Set alarms to take medication
- Have your groceries delivered or use grocery pick-up services
- Use a shower stool
- Do more things sitting down instead of standing
- Have an indoor pair of sneakers
- Keep electrolyte packets in multiple places (I always have 1 in my bag)
Posts To Read
Hacks for Chronic Disease Management That You Need
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Developing and being diagnosed with a chronic illness is overwhelming, and I don’t mean to add to that. But unfortunately, you can’t identify what helps or hurts your body without doing these things. You have to research your illness to know where to start. You have to track your symptoms along with the many different things you try so you can analyze them and identify what works for you. You have to develop and find your new normal in order to live a better life, and you need to find your own chronic illness hacks to make that happen.
Like everything else in this post, what works for someone else won’t work for you. That’s why it’s so important to find the things that impact you specifically.
Like this post? Check out:
120 Resources for Living a Better Life with Chronic Illness, What Is Advocacy? A Patient Advocate’s Guide, Crucial Ways to Prep for Surgery Recovery Ahead of Time, What No One Tells You About Autoimmune Diseases
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Important things for us to do. The sooner we learn, the better.