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by Chelsea Goldstein, Dysautonomia Information Network

IMG_BodyMind.jpg.f09a2eefc40cc826f749788b8ba851fa.jpgIf you've had to adjust to life with chronic illness, you've probably experienced stressors that people without health concerns don't even think about. Day-to-day tasks can seem insurmountable when you tackle them with pain, extreme fatigue, brain fog, and even syncope. Medical appointments can be stressful, especially if doctors don't have strong understandings of your condition(s). It can be exhausting to feel like you have to explain your condition(s) to everyone around you. Even then, they still may not understand (1). 

This article is meant to provide a few tips on how you might manage some of those stressors in your everyday life. These tips are not meant to be a substitute for professional medical advice, and any changes in lifestyle and routine that may impact your health should be discussed with your doctors. If you feel like you may be living with an anxiety condition, you should reach out to a mental health professional for support. Our article, I Can't Just Relax: Understanding Anxiety and Chronic Illness, may also be a helpful resource. If you or a loved one is experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255.

Symptoms of Stress
As mentioned in many of our articles, dysautonomia is NOT caused by stress or anxiety, but it is common to experience stress as a result of navigating daily life with dysautonomia.

One of the most common issues we hear from our members is that doctors mistake dysautonomia symptoms for stress or anxiety during their diagnostic processes, which can lead to complex feelings surrounding stress and anxiety. If we admit we are struggling with adjusting to life with dysautonomia, will doctors dismiss our dysautonomia diagnosis? How do I know if what I am feeling is caused by stress or dysautonomia? 

First, there is absolutely no shame in feeling stressed as you navigate day-to-day life with chronic illness. It's tough, and it is normal to feel overwhelmed in these circumstances. It can also be difficult to discern the source of your symptoms, since the physical symptoms of stress and dysautonomia can present similarly, including headaches, muscle tension, chest pain, fatigue, digestive issues, and sleep difficulties. 

If you are having a hard time figuring out if you are experiencing stress/anxiety, taking a closer look at your emotions and behaviors may be helpful. Feeling restless, having a lack of motivation, feeling overwhelmed, outbursts of irritability and anger, pervading feelings of sadness, overeating or under-eating, drug or alcohol misuse, and social withdrawal may all be symptoms of stress (2).

Tracking your daily physical symptoms, emotions, and even triggering events can be one way to better understand the sources of your symptoms. You can do this using a small notebook that you carry with you throughout the day. It may be helpful to use a rating scale (e.g., 1-5) to rate the severity of your top five to ten symptoms each day. You should also record a little bit about your overall emotional experiences that day, as well as major activities. For example, how many hours of sleep did you get the night before? How active were you? What was your nutrition like that day? 

Over time, you will start to see patterns emerge - certain symptoms may get worse when you feel stressed or sad, or getting too little sleep may trigger your body to react in specific ways. Whatever you discover, it will be invaluable to have this data about your own body to better understand how to manage your condition(s) and any stress that may arise from living with them. 

There are also several apps that help you track symptoms. Flaredown is a free tracking app designed for chronic illness, and Tally and Symple are both free trackers with the options of paid upgrades. CareClinic embeds medication reminders and is $9.99 per month (3). You may want to explore a few options to find one that can be customized to your specific needs.

Understanding Stress
If you've been able to identify that health-related stress is impacting your life, it may be helpful to dive deeper into the specific experiences or circumstances that are the most stress inducing.

Cognitive Behavioral Therapy (CBT) is a type of talk therapy conducted with a mental health professional who helps you process challenging situations in clear ways, so that you feel more in control of your specific stressors. Each therapist and client will approach CBT a little bit differently, but here a few general steps you might expect:

  1. Identify the stressful situation. Sometimes we have difficulty articulating what, exactly, is stressing us out when we are overwhelmed, so the first step of CBT is to identify the specific stressful triggers in our lives. If there are multiple stressors in your life, you and your therapist may spend some time pinpointing the ones that you want to prioritize (4).
  2. Cultivate awareness. A therapist will work with you to help you become aware of your thoughts, emotions, and beliefs about the these specific stressors. It may be helpful to keep a journal during this phase (4). For example, you may believe that everyone is annoyed when you cancel plans last minute to manage your illness. This may lead you feel guilt and frustration, and may make you think that none of your loved ones understand the severity of your situation. 
  3. Identify negative/inaccurate thinking. Your therapist may ask you to focus on your reactions to your stressors, including physical, emotional, and behavioral reactions. Perhaps, you feel left out when you see your friends post pictures of the activity that you had to drop out of last minute. This may be followed by anger if your friends don't check-in with you, or you feel like they are starting to invite you to less outings. You may react by limiting contact with your friends. These are just a few examples of understandable reactions to this situation. They may, however, also be unhelpful in some cases. For example, some of your friends may want to spend time with you, but are hesitant to invite you to activities because they don't want you to feel bad if you can't go. Maybe they do get frustrated when you cancel plans because they don't understand your condition well, but they would be open to learning about it and would likely have more empathy if they had a deeper understanding as to why you regularly cancel plans. This phase will help you identify thought patterns that may be making you experience the situation in a more negative light than necessary. 
  4. Reshape inaccurate thought patterns. It can be difficult to identify what parts of our reality are coming from fact, and what parts are coming from inaccurate, ingrained thought patterns. A therapist will help you work through this step (4). You may even be able to use the knowledge you learn to direct the situation, in some cases. For example, you could arrange an activity you know you could do with your friends, like watch a movie at your house, and use it as an opportunity to tell your friends you still want to be included in outings even if you have to cancel last minute. 

It generally takes five to twenty sessions with a therapist to complete CBT for specific stressors. CBT is just one stress management technique, and you should work with a mental health professional to decide what is best for you. 

Processing Feelings
Frustration, overwhelm, and guilt are major sources of health-related stress. A variety of strategies, including CBT, can help us process these emotions.

Frustration & Feeling Overwhelmed CBT is a great strategy for processing frustration and feeling overwhelmed by your health condition(s). Here are a few more strategies that may help:

  1. Make a list of the specific things in your life that trigger frustration or feeling overwhelmed. What can you take action on? Focus on only one or two items on your list at a time. For example, one person was worried about losing her job because her health caused her to fall behind on deadlines. She focused on that stressor and decided to talk to her doctor about her energy levels, research disability benefits, and search for jobs that were appropriate for her current health (5). Our work and disability articles may also provide some guidance.
  2. Journal your feelings in a less structured way. Sometimes, just getting our feelings onto paper can be therapeutic. Free writing is a great strategy: set a timer for a few minutes and the only rule is you must keep writing. This helps you express your genuine thoughts and feelings because you aren't able to overthink how and what you will write down.
  3. Schedules and systems can be effective tools to help you mitigate the stress of managing multiple medical appointments, or accomplishing day-to-day activities with limited energy and plenty of brain fog (5). Many years ago, I sat next to a woman on a plane who told me the secret to limiting stress was building margin into my day. It was a simple statement, but made me think about my habit to pack far more than is humanly possible in 24 hours, especially with chronic illness. From that moment, I started block scheduling, or scheduling chunks of time when I would only focus on one task or set of tasks. I have listened to that stranger's advice by always adding at least 30 extra minutes to however long I think a task will take me. It has helped with my brain fog because I only focus on the task at hand. It also encourages me to keep up with my daily self-care, like meditation and light exercise, because they're pre-scheduled. Finally, I break down my overwhelming to-do list to fit within the blocks (e.g., I usually prioritize one major task and one to two small tasks during my morning work block each day). You can learn more about the details of block scheduling from this awesome blog

Even though it may seem illogical for someone to feel responsible for something they can't control, many people with chronic illness feel guilty about how their health impacts people around them (6). A major step in processing that guilt is understanding where it comes from:

  1. Being a financial burden is a common worry among people with chronic illness. How will my family cope if I can't work and we lose my income? How will we pay my medical bills? It is easy to ruminate on how much better your finances may be if only you weren't so sick (6).
  2. Sometimes, we also worry about being a physical burden. Needing help with tasks like bathing, walking, and driving, can put extra strain on both you and family members. It can also be emotionally taxing to need/provide help in such intimate ways (6). 
  3. We may also feel like we are the "high-maintenance" friend or family member. This may be a particular source of guilt if you have a lot of dietary restrictions that impact where, when, and what you can eat. Our loved ones may have made comments or jokes about our needs when out and about that put us in positions of feeling like we have to compromise our health to avoid such commentary, or risk getting negative feedback when we vocalize our needs (6).

Nearly everyone I know living with chronic illness has felt guilty about their health at one point or another. Once we understand where it is coming from, what can we do about it?

  1. Similar to CBT, it can be helpful to practice separating the reality of the situation from the unhelpful thought patterns we may have around the situation. For example, is it realistic to believe that you could magically hold a full-time job if you haven't been able to work for months? Probably not. Therefore, thoughts about you being useless unless you can work to support yourself are unhelpful and untrue (6).
  2. Once you recognize these unhelpful thought patterns, it can make you feel more in control by shifting focus to the positives - what you can still do. A gratitude journal is one way to intentionally focus on the good in your life (6). We discuss several other self-care strategies below that may be helpful, too.
  3. A shift in perspective can help us view ourselves through the eyes of our loved ones. If roles were reversed would we feel like our loved one was a burden? We may feel stressed about the situation, but we would most likely want our loved one to be as comfortable, happy, and healthy as possible. This can help us believe them when they tell us we are not burdens in their lives (6).

At Home Self-Care
There are many aspects of our lives we can't control when we live with chronic illness. Self-care may seem trivial, but it can be one way to reserve a small moment of your day to prioritize your mental, emotional, spiritual, and physical health.

Self-care can be a tough concept. Meditation, sleep, journaling, nutrition, exercise, hobbies, connection, and laughter can seem trivial when we are dealing with endless symptoms, financial troubles, or other major issues that accompany chronic illness. However, the value of self-care may lie in the fact that it forces us to say "no" even for just a few minutes. We have a moment to say no to the worry that may plague our thoughts all day long, its a tool to say no to activities that we know are harmful to our health, maybe it's just saying no to cooking dinner or attending a volunteer activity when we really just need a break. Sometimes, we need to say no to ensure we are preserving what mental, spiritual, and physical health we can. 

Mindfulness and meditation are a couple of strategies to help us actively say "no" to ruminating thought patterns that can cause stress. Mindfulness is the act of focusing on a task at hand to slow down the stressful thoughts that can activate the sympathetic nervous system, which in turn can worsen many dysautonomia symptoms. For example, if you are driving to a stressful medical appointment, mindfulness encourages you to be hyper focused on the present act of driving so you do not get consumed with stress and worry about the upcoming appointment. Thinking about stressful situations is normal but when we begin to ruminate on them for a long time they usually become more harmful than helpful. Mindfulness is a tool to help us escape that mental merry-go-round (6).

Similar to mindfulness, meditation is a way to disrupt stress-induced thought patterns and refocus attention on the present to produce feelings of calm. There are countless types of meditation including guided, transcendental, deep breathing, chakra, etc. It may take some time to discover a type that works for you, but try not to get too caught up on the stereotypical image of a cross-legged, straight-backed, chanting yogi. That structure probably won't work for many people with chronic illness. I enjoy guided meditation to keep me focused, and I always lay flat on my back with my eyes closed and my body relaxed. I also meditate for no more than 10 minutes a day. This is the style that is sustainable for me and my body. What works for you may be different. If you are new to mindfulness and meditation, these resources may help you get started:

  1. The book, Mindfulness to Go: How to Meditate When You Are On the Move, is a good resource for people who can't commit to a block of time to meditate each day, but want to infuse some mindfulness practices into their existing routine. 
  2. The Headspace app is a great tool for those who want to build a regular meditation practice into their day. Their short meditations are designed for beginners, you can track your progress in the app, and you can even pair with another user for accountability.
  3. The Calm app is another popular meditation resource. It provides guided meditations, breathing exercises, and even sleep stories (1).

Strong sleep hygiene is another invaluable self-care tool for many people living with chronic illness. Sleep hygiene is a strange term and, no, it does not refer to bathing before bed. It is used to describe the habits and routines that we have around sleep to encourage the most restful experience possible. If you are someone who struggles to fall asleep or stay asleep (hello, me too!), and sleep aids give you nasty side effects like brain fog, then cultivating strong sleep hygiene habits may be beneficial to you. 

Before building stronger sleep habits, it is important to assess your current sleep to gain a complete understanding of what may trigger your restlessness. Track the following things each day for two weeks (1):

  1. Caffeine intake
  2. Alcohol consumption
  3. Computer/phone screen time
  4. Time you went to bed
  5. Hours of Sleep
  6. Wake-up time
  7. Number of times you woke up in the night and why

Your smartphone can be a helpful resource to track daily screen time, and how often you wake throughout the night (1). After two weeks, assess this data. Do any patterns emerge? For example, I found that it always takes me several hours to fall asleep if I drink coffee in the afternoon. I switched to drinking coffee only when I wake up, and drink tea later in the day if I need a pick-me-up.

Depending on your specific sleep patterns, some of these sleep hygiene tips may encourage more restful sleep (1):

  1. Limit your caffeine intake, especially after 2 pm 
  2. Engage in light exercise each day, but avoid exercise four hours before bed
  3. Use blue light filters on your electronics, or blue light filtering glasses
  4. Establish a bedtime routine around the same time each night (e.g., drink a cup of herbal tea and read). Over time, your body will be triggered to prepare for sleep when you engage in your routine
  5. Ensure your sleep space is dark and cool (This may be especially important if you deal with temperature regulation issues!)
  6. Set your phone on Do Not Disturb at a specific hour each night, and ensure it is face down so the light does not disrupt you
  7. Do not lie in bed trying to fall sleep for more than 20 minutes. If you can't fall asleep, get out of bed and engage in a non-stimulating activity (e.g., read a calming book, or do a repetitive task like knitting or coloring)
  8. Try to wake up around the same time everyday

Good sleep is often overlooked, yet so many of us with dysautonomia struggle with falling and staying asleep. These habits don't guarantee perfect sleep every night, but practicing them regularly will likely improve your overall sleep hygiene. For me, I have found that getting good sleep can do wonders to improve nearly all of my other symptoms. I've learned to make my sleep routines some of the most important parts of my day.

We could write an entire book (and then some) on self-care techniques. Many of them fall within the categories of nutrition and exercise, but we won't discuss those here. Instead, we encourage you to check out our articles specifically regarding these topics on DINET.org. A final type of self-care we think is important  to mention is connection, both with yourself and others. 

Connection with Yourself

One way to connect with the "true you" is to make time for your hobbies. If you don't feel like you have any hobbies, a good question to ask yourself is, "What made me light up when I was a kid?" 

Pursuing hobbies to minimize stress can seem like a cliché suggestion, but research demonstrates that engaging in hobbies is associated with significant, positive effects on our health, such as lower cortisol levels, decreased waist circumference, and perceptions of better physical function. Hobbies are also associated with better psychological states (7). 

Why? Perhaps because hobbies cultivate eustress, or healthy stress that is defined as stimulating enough to help us feel excited about, and engaged in, life, but is not too overwhelming. A hobby can be particularly beneficial if you feel a bit stuck, which can occur when we are home bound for periods of time due to our health needs (7).

A sense of humor has also been shown to significantly decrease stress (2). Sometimes we can even find humor in the very things that stress us out!

Connection with Others

Humor is a great way to minimize stress on your own, but it can also be therapeutic when shared. Many people who live with chronic illness share a particular type of humor - raise your hand if you've ever laughed with a fellow chronic warrior about the absurd situations you have been in due to your health needs! 

A shared sense of humor is just one example of the benefit of connecting with other people who also have chronic illness. I have made a number of friends over the years in hospitals, on social media, and through DINET. I have never even met many of them face-to-face, but they have been invaluable, trusted friends who I couldn't imagine my life without!

It is also important to foster connections with your loved ones who don't live with chronic illnesses, but these relationships can be challenging if you do not feel like they understand your situation. One way to appreciate these relationships, even if there isn't full understanding, is to identify the strengths of each one. For example, you may have a funny friend who is always up for making you laugh through a struggle, and you may find that another friend is a fantastic listener. Perhaps you gravitate toward each of these friends in different situations, and that is okay. If you are struggling to identify trusted relationships in your life, you can review this list of qualities to look for in healthy, trusting relationships. Who in your life embodies these qualities? Write their names down, and what you love about each of them. Keep this list close. Also remember to think about what you can give in these coveted relationships because you certainly have a lot to offer, too!

Resources

Article Citations

  1. Living with Dysautonomia. (2018, May 16). Cleveland Clinic. https://my.clevelandclinic.org/health/articles/17851-living-with-dysautonomia
  2. Stress Management. (2019, April 4). Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987
  3. Menchaca, D. (2020, February 20). 5 Symptom Diary & Health Journal App. Teamscope. https://www.teamscopeapp.com/blog/5-diary-apps-for-tracking-symptoms
  4. Cognitive Behavioral Therapy. (2019, March 16). Mayo Clinic. https://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/about/pac-20384610
  5. Marina (2020, January 20). The Discerning You. https://thediscerningyou.com/how-to-cope-when-you-feel-overwhelmed-by-your-chronic-illness/
  6. Keys, A. (2019, June 4). Surviving the Guilt that Comes with Chronic Illness. Dysautonomia Information Network. https://www.dinet.org/info/newsletters/surviving-the-guilt-that-comes-with-chronic-illness-r221/
  7. Scott, E. (2019, September 30). The Importance of Hobbies for Stress Relief. Very Well Mind. https://www.verywellmind.com/the-importance-of-hobbies-for-stress-relief-3144574

Additional Resources

  1. DINET Forum https://www.dinet.org/
  2. National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/
  3. National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml
  4. Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness
  5. Increase Your Productivity with Block Scheduling by the Work at Home Woman. https://www.theworkathomewoman.com/block-scheduling/
  6. Mindfulness to Go. https://www.davidharp.com/
  7. Headspace. https://www.headspace.com/
  8. Calm. https://www.calm.com/
  9. MentalHealth.gov. https://www.mentalhealth.gov/talk/people-mental-health-problems

NOTE:  This article is available in pdf format below.  Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, the name of the group and the number of copies requested. 

PDF link:

https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:76fbe912-1358-4ca1-b909-fcec4470e42a

 


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