As this month marks 18 years since my chronic pain started, I’ve been reflecting a lot on what my life has looked like and how it has been impacted by this pain. I have said for years that I “benefited” by starting to experience pain so young because I learned how to be an adult while dealing with it; basically, I didn’t have to completely re-shape my life because I developed chronic illnesses. But I know that that’s not the case for everyone, and adjusting to the chronic illness life can be hard. With that in mind, I’ve pulled together this chronic illness advice post to help any newly-diagnosed patient. (While I’m sure that people who have been diagnosed for a while can benefit from this post, I did keep the newly-diagnosed in mind when writing it.) I hope that it helps you!
Please remember that I am not a medical professional! I’m giving you advice as a long-time patient.
Chronic Illness Advice: Research
Why you should research: Other patients can be awesome resources. Don’t get me wrong! But your 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. 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.
How to research: Start with a simple Google site 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.”
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Chronic Illness Advice: Keep a Record
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.
Why you should do it: Annoyingly, many medical professionals tend to not take patients at their word unless there is concrete data. Keeping a record can help you have more standing with your medical team. For example, a few months ago I 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.
Another reason why you should keep a record is to help figure out what foods might be contributing to your symptoms. In this case, you would keep a diary of what foods you ate and how much, 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.
Chronic Illness Advice: 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 thinking about what might cause 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.
How to do this: Take the records that you’ve kept from above and take a good long look at them. What trends are popping out? What thing is especially weird? 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? Finding patterns can help reduce or prevent your symptoms. 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.
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Chronic Illness Advice: Find 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 for your symptoms, medications, diet, appointments, and more. You are absolutely allowed to grieve giving up 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.
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 thing 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 things.
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 speciality.
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What advice would you give a new chronic illness patient?
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