This post offers ten tips for managing chronic illness. Having a chronic illness adds extra mental work to your already full plate. When you have brain fog on top of that, you can easily lose track of how you wanted your day to go. Your symptoms are there to give you signals from your body about when to slow down, and what to prioritize.
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What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.
MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.
Check out this post on how to manage MCAS.
1. Recognize the struggle of managing chronic illness
The everyday realities of chronic illness are multi-layered. The first tip for managing chronic illness is to Acknowledge your experience for all that it is. Honor your feelings and get professional support when needed. The fatigue, trauma, and stress of having a chronic illness all need to be named and processed in a healthy way to be able to continue to function.
2. Choose support wisely
Getting the support you need for managing chronic illness is key to survival. Choose support wisely and avoid toxic people and relationships who don’t feed you. Don’t hang out with people who take from your already tapped-out energy stores in your downtime. Seek supportive relationships with people who get what you are going through. It can be more challenging to find them, but associating with like-minded people through support groups or online chats can give you the validation you need.
3. Prioritize yourself
It’s easy to put other people before yourself. But when you are managing chronic illness you need to Prioritize yourself and delegate anything and everything that you can. This is for your survival. Figure out how those around you can help, and ask for it. You can’t do everything, and your survival depends on taking care of yourself. Easier said than done. But focus on radical self-care ideas that give you the most bang for your buck. Take naps, even micro-naps!
4. Don’t make assumptions
You know everything there is about managing chronic illness, but those around you might not have a clue. Don’t assume that those around you, even your partner or closest friends, understand the full impact of your illness on your everyday reality. Find ways to let them know how you are doing and ask them for help. Making assumptions can create even greater feelings of isolation.
5. Set up survival stations to manage chronic illness
A survival station is a set of tools, foods and hydration, medications, and resources for when you are in survival mode. Set up survival stations wherever you are likely to be if you are having a symptom flare.
For instance, if you are likely to crash on the couch when you are in the midst of a flare, set up a survival station there with the things you will need to get through it. Have some of your rescue medications or supplements there, a bottle of water, a snack, a book, a phone charger, and whatever else helps distract you from your symptoms and helps you get through them.
Set up mini survival stations throughout your home like having a set of your rescue meds in your bedroom for nighttime flares, a few items in your purse or backpack for when you start to have a symptom flare away from home, and a set of key items at your work station.
When I had twins I set up survival stations where I breastfed the babies on my living room couch and in my bedroom, where I often gave them night feeds. It included pillows, water, trail mix, a phone charger, some fun things to do with my older child, and a crossword book. There were multitudes of hours that I sat at my nursing station, and without these key items, my blood sugar would have crashed, and I would have lost my mind.
And don’t forget to restock your survival station(s) after a flare!
6. Make routine appointments special
Doctor and healthcare provider appointments are a regular part of life with chronic illness. In one year when my daughter was sickest, we logged over 200 in-person appointments. That adds up to a lot of transportation to and from providers, transitions in and out of the car, moving into and out of the provider’s office, and managing logistics like snacks and medications while away from home. And on top of that, you have the mental fatigue of making the appointments, remembering the questions you want to ask your provider, keeping track of your symptoms, and dealing with the trauma of revisiting places where you may have experienced prior trauma.
Make appointments more palatable by making something special about each one. It doesn’t have to be something big that takes a lot of planning. Think of having a special treat every time you have to have a blood draw or painful procedure. Or plan to talk on the phone with a friend before or after an appointment to make it special. Or think of some way to address the negative aspects of revisiting a place where you may have had physical or emotional pain by giving it a positive name, like “the rainbow clinic.” Calling it something that elicits joy helps to shift your mindset.
This doesn’t negate the fact that you still have to make, plan for, and attend lots of appointments with a chronic illness, many of which are unpleasant and downright painful. Don’t adopt toxic positivity; see the reality of the situation, and brainstorm how to make it a little more pleasant. You can’t change the reality; this is simply meant to be a strategy to keep your mental health intact while you get through them.
7. Plan personal retreat time
Personal retreats are times when you get out of your everyday mindset and gain perspective.
When you have a chronic illness it may not be possible to enjoy a spa day or even a vacation. But with a little creativity, you can plan a personal retreat that makes you feel like you have been away and is refreshing.
When my daughter was sickest I literally couldn’t be away from her for more than an hour. So I came up with ways to feel like I was “on vacation” and called them personal retreats. I’m linking a post I’ve written about spiritual retreats here that has many helpful ideas that apply to personal retreats. Think of having some art supplies in your car for doodling while you wait between appointments.
8. Cultivating gratitude can help you with managing chronic illness
According to Laura Grace Weldon, people who practice gratitude are happier, healthier, and more effective.30 Weldon points out that what we pay attention to is amplified, and this holds for gratitude especially.
By making a consistent practice of being grateful for our lives, our family, the food we eat, and even the dark things we must deal with, we amplify the attitude of thankfulness, keeping things in perspective.
Studies show the practice of gratitude makes people feel happier and more refreshed when they get up in the morning. Those who keep a gratitude journal are 25% happier than those who don’t. And those who offer other people expressions of gratitude feel they have more emotional support in their lives, sleep better, and have lower levels of anxiety and depression.
Here are some easy ways to incorporate the practice of gratitude into your life:
- Say “Thank you” regularly.
- Keep a journal of the things for which you are grateful.
- Tell your loved ones what you appreciate about them.
- Think of something you like about yourself before you get up in the morning, or before you go to sleep.
My gratitude practice consists of thanking God as many times as I can remember to do so in a day. Over years of practicing gratitude, I have developed the habit of thanking God when I have the chance to take a breath during the day, before I eat, and as I’m falling asleep. This practice is informal, and I practice it when I have the chance. It is never something that I feel guilty about if I forget. It has become a practice that I look forward to doing, and it feeds me when I do.
The bucket theory
The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.
Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.
Know your typical symptom progression
Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.
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9. Fill your bucket of joy
When you have a chronic illness, if something brings you joy or is restorative, it should be considered an absolute necessity. Plan ahead for whatever you can, like a massage, a walk with a friend, or ordering food. Then have a bag packed for the instant you have a brief unplanned break, with whatever you need to recharge so that you can take advantage of it. Think about what really feeds you and have it ready to go, like a book, a chocolate bar, or funny videos cued up on YouTube and ready to watch on your phone.
10. Deal with the trauma of managing chronic illness
Addressing the trauma of chronic illness frees up mental, emotional, and physical resources for healing. If you are constantly battling the symptoms of trauma then your body literally cannot heal. See my posts on Vagus Nerve Health and Understanding Trauma with Chronic Illness.
What are your tips for managing chronic illness?
What helps you deal with the everyday realities of having a chronic illness? I’d love to hear your comments below!
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