Living with chronic illness is damn difficult. If you’re reading this post, you probably know that. I’ve lived with it for over 20 years, and I’ve tried all sorts of different things over the years to make life easier with it. Skip a few decades of struggles by checking out my hacks for chronic disease management in this post.
This post is a much-expanded version of a 2016 post about the lifestyle changes I made for my rheumatoid arthritis. In this version, I’m including things I do, but I’m also including other things you might want to try but that I don’t do. We’re all different, even if you have all the exact same illnesses I do, so what works for me might not work for you and vice versa.
This post contains affiliate links. I am not a medical professional of any kind.
Food and/or Diet
Investigating if you are intolerant to foods that many chronic illness patients can’t tolerate
Have you ever felt that a food irritates your chronic disease symptoms but you’re not allergic to it? Then you might be intolerant of it!
I have this experience with gluten, dairy, corn, soy, and eggs. They all cause me more (in some cases intense) joint and/or muscle pain, but I don’t have Celiac disease and I don’t have a traditional allergy.
As the Cleveland Clinic says, “When you have celiac disease, gluten damages the small intestines. If you have a non-celiac gluten sensitivity, your body has a harder time digesting gluten” (x).
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One way to figure out if you have food intolerances is by tracking your symptoms and what you eat. That way, you can see that your symptoms are worse when you eat one particular thing, which you couldn’t tell before you wrote down what your symptoms were and what you ate that day. Learn more about tracking your symptoms here (and get free downloadable symptom trackers).
If you have an autoimmune disease, can also consider trying the autoimmune protocol. There are some common foods that autoimmune patients tend to be sensitive to, which is why trying AIP can help you figure out if you are one of those patients with food intolerances.
Healthline says, “The AIP diet focuses on eliminating these foods and replacing them with health-promoting, nutrient-dense foods that are thought to help heal the gut, and ultimately, reduce inflammation and symptoms of autoimmune diseases” (x). When following AIP, you eliminate the common foods for a while and then add them back one at a time to test your body’s reaction to them (x).
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Meal prep/delivery plans
These are perfect for chronic illness patients with limited energy! Whether it be grocery shopping or cooking that you need help with, these make it easier. Cutting down on time shopping can increase your energy, and if you are someone who feels better when you eat “better,” these are perfect for helping you. Here are some you might want to try:
Hello Fresh – “HelloFresh delivers step-by-step recipes and fresh, pre-portioned ingredients right to your door. First, you set your meal plan preferences with options for carnivores, vegetarians, calorie-counters, and more. You’ll choose from 30+ delicious weekly recipes carefully put together by our chefs. Then, you’ll receive those recipes with easy-to-follow instructions on the day of your choosing. You can skip a week or cancel anytime if your needs change” (x).
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Blue Apron – “Blue Apron is a fresh ingredient and recipe delivery service that helps chefs of all levels cook incredible meals at home. We take care of the menu planning and shopping (providing you with fresh, locally sourced ingredients in pre-measured quantities), so all you have to do is cook and enjoy” (x).
Green Chef – “We offer premium, organic ingredients, and recipes for almost every lifestyle to help with your healthy lifestyle without losing your favorite flavors – that’s why we’re the #1 Meal Kit for Eating Well” (x).
Green Chef’s options include keto + paleo, vegetarian, Mediterranean, fast & fit, vegan, and gluten-free. And you can select multiple, so you can choose gluten-free AND vegan.
Freshly – Freshly “is fully cooked and shipped to you fresh, not frozen, so all you need to do is reheat and enjoy following the instructions on the back of each meal sleeve” (x). Additionally, “We accommodate a variety of dietary preferences, including plenty of gluten-free, dairy-free, peanut-free, plant-based, low-calorie, and carb-conscious options. As a customer, you can set your own dietary preferences and easily find the meals that work for you” (x).
Daily Harvest – The food you receive from Daily Harvest is all gluten-free and dairy-free. They say, “Everything we make is easy to prep, with specific instructions depending on the collection you are enjoying. So when you’re looking for something nourishing and delicious, we’ll be chilling in the freezer – ready whenever you are. We strive to bring you convenience without compromise – just another way we take care of food, so food can take care of you” (x).
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Grocery delivery
Walking around a grocery store, no matter how much prep I do, is very painful for me. And that doesn’t take into consideration carrying things or putting them away when I get home or the COVID-19 exposure risk that exists now.
So I order my groceries online and just have to carry them inside from my front door. It is an absolute game-changer.
There are a lot of different places where you can order your groceries, and the costs can vary a lot. It’s also important to me that I tip the delivery drivers/shoppers, and I count that all as part of my grocery budget.
Grocery shopping online is not without fees, but to me, the fees are what I pay for being able to skip in-person grocery shopping, which really means being able to have less pain.
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Exercise
Listen to what your body is saying
You know your body best, and you may be like me and have a body that responds negatively to 99% of exercise. So don’t do it if it makes things worse!
That being said, you might be someone who feels better with exercise. In which case you absolutely should try it!
If you have fibromyalgia, certain exercise can help your pain. I personally need to move a certain amount for my fibromyalgia pain to be manageable! But don’t just try any exercise; “Experts typically recommend any low-impact aerobic activity, such as walking, swimming, or cycling” (x).
That being said, exercise can also make illness significantly worse if you have a condition like myalgic encephalomyelitis. Anecdotal evidence, as well as emerging studies, “clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS” (x).
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Find what works for you
The point is that you know your body better than anyone else, so you should find what works for you.
I’ve recently discovered that, for me, pilates is the only form of exercise that doesn’t make some part of my pain worse. Don’t get me wrong, I love yoga. But even yoga can hurt me in some way.
Maybe cycling is easiest on your body, or maybe it’s running. You might need to try a lot of different types of exercise to figure out what is best for you. Thankfully, there are many different free classes and examples online so you can try different things.
I make an effort to walk a certain amount every day (dogs are the perfect way to make that happen). I do at least a small amount of yoga every day. In general, I do what I can to make sure the muscles in my body are able to help my joints work well and protect them from themselves.
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Resting
Actually rest
Rest is so important for chronic illness patients, but it’s also something that can be hard to get.
If you’re having trouble getting actual rest, ask yourself if you’re really trying to rest or instead just taking a break.
Yes, there’s a difference!
I take a lot of breaks, but working on this blog (for example) isn’t resting. I love it, but resting is watching TV or reading, not listening to music while writing 1,500-3,500 word blog posts and running 4-6 social media accounts. I’m trying to get better at resting before I need to, but I’ll be the first to admit that I’m not there yet.
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Use a mobility aid
You are not a failure if you use a mobility aid. You are not “giving up” if you get a cane. I promise you.
If your life is better with a mobility aid, you should use one.
I recently visited my sister in New York City and I used my cane more than I normally would. I did so because I wanted to maximize my energy and minimize (as much as possible) my pain. And using it made such a difference!
If you get a mobility aid, you don’t have to use it every day. You can use it occasionally or every day.
I love my cane. It makes my life better, even though it took me a long time to accept that I might sometimes need it.
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Alternative Medicine
Every patient is different, both in terms of how they manage their disease and what works for them. For some people, alternative treatments do nothing, and for others, it’s the main way they want to treat their disease. I’m using “alternative treatment” as a wide term here; it could be massage therapy, acupuncture, chiropractic care (my personal fav), etc. Some of these are just alternatives to Western medicine; for example, acupuncture has been used for thousands of years. It’s not much of an “alternative”.
So find what works for you, and understand that what works for someone else might not work for you.
Find someone reputable
When it comes to seeing an alternative practitioner, it’s especially important to vet the people you might see. These practitioners aren’t regulated to the same level as western medicine, at least in the U.S., so you need to do your homework.
Read their website to see how many years they’ve been open and how long they’ve been practicing. See what education they received and look into those institutions. See what kind of treatments they provide. You get the picture!
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Chiropractor
Here’s the thing: I love the chiropractor and have benefited extensively from chiropractic care. But if you go to a bad chiropractor, best case scenario you spend money on something that doesn’t make a difference, but worst case scenario you can be injured.
That being said, what is chiropractic care? WebMD says, “Chiropractic is a healthcare profession that cares for a patient’s neuromusculoskeletal system — the bones, nerves, muscles, tendons, and ligaments. A chiropractor helps manage back and neck pain through the use of spinal adjustments to maintain good alignment” (x).
I’ve been able to stave off significant injury to my hand by using chiropractic care. I have ribs that don’t stay where they’re supposed to and chiropractors can put them back in. My mom deals with degenerative disc disease and has found a lot of help from chiropractic care, as has my grandmother who deals with the same thing.
If you have bone problems, especially spinal or back pain, consider seeing a chiropractor.
If you’re in Massachusetts’ North Shore, check out North Shore Spine & Sport. Dr. Melander is a hero of mine and I’m so sad he left Boston. When I lived in Maine, I saw Dr. Saulter in Falmouth. I can’t guarantee they can help you, but these are two doctors that I saw.
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Acupuncture
Acupuncture has been used for thousands of years! The first recorded mention of it is from 100 BCE (x). Acupuncture treatment involves inserting “very thin needles through your skin at strategic points on your body” (x).
According to Chinese tradition, acupuncture is “a technique for balancing the flow of energy or life force — known as chi or qi (chee) — believed to flow through pathways (meridians) in your body. By inserting needles into specific points along these meridians, acupuncture practitioners believe that your energy flow will re-balance” (x). Additionally, “many Western practitioners view the acupuncture points as places to stimulate nerves, muscles and connective tissue” (x).
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Cupping
Cupping is another alternative treatment that has been around for thousands of years. A 2017 article says, “Though the exact origin of cupping therapy is a matter of controversy, its use has been documented in early Egyptian and Chinese medical practices” (x).
According to the Cleveland Clinic, “Suction from cupping draws fluid into the treated area. This suction force expands and breaks open tiny blood vessels (capillaries) under the skin. Your body treats the cupping area like an injury. It sends more blood to the area to stimulate the natural healing process. Some people theorize that cupping clears the pores and releases toxins” (x).
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Massage
Therapeutic massage can help you with chronic pain! Harvard Medical School says that “60-minute therapeutic massage sessions two or three times a week for four weeks relieved chronic neck pain better than no massage or fewer or shorter massage sessions” (x).
Additionally, massage can help your mental health, which is certainly challenging if you have a chronic illness. A 2010 study specifically found that the “integration of massage therapy into the acute care setting creates overall positive results in the patient’s ability to deal with the challenging physical and psychological aspects of their health condition. The study demonstrated not only significant reduction in pain levels, but also the interrelatedness of pain, relaxation, sleep, emotions, recovery, and finally, the healing process” (x).
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Like this post? Share it! Then check out:
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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.
Good suggestions that give everyone something to think about. Your point about finding what works for you is also so important. Take what you can use, skip the others and keep an open mind because so much is trial and error. x