What's Next? Coping with Uncertainty When You Have Chronic Illness

Living with chronic illness is so much more than dealing with a myriad of physical symptoms. Some of the most common struggles our members deal with are unanswered questions about the future: Will I ever get better? How will I support myself? Will it get worse as I get older? How will it affect my relationships? Navigating the unknowns of living with chronic illness is such a common and impactful experience that researchers have developed a term for it - illness uncertainty. Research has found that this type of uncertainty is heightened when people live with chronic illnesses that have unpredictable outcomes (1). And, as you know, there are very few certainties in living with dysautonomia other than, well, we're all pretty unsure about the future. 

Life without chronic illness is unpredictable enough, but when you add a condition that you have little control over it naturally leads to questions about the future. It's normal to ask these questions, and if you feel like this uncertainty has developed into 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.

10 Common Future Fears
You may feel alone in navigating the increased uncertainty of your future with chronic illness. Connecting with other people who have similar conditions can show you that many of your questions about the future are quite common among this crew!

1. How will I feel today? I'm sure you understand the bodily changes that can occur from day to day, even moment to moment, when you have chronic illness. You may have gone to the gym in the morning, and by the afternoon you are bedridden with a migraine. Many of us with chronic illness wake up with the question, "Will my body keep up with my plans today?" This can cause incredible uncertainty regarding whether or not we will be able to get through our everyday activities (2).

2. Will I ever escape this vicious cycle? How many of you can relate to the following: A migraine attacked yesterday, which means you only got an hour of sleep last night. That lack of sleep triggered all of your symptoms so, today, you have terrible pain and nausea, not to mention exhaustion. You try to drink some coffee for a little boost, but that nausea won't let you. It also won't let you eat much, so now your body lacks nutrition. You go to bed early hoping to recover, but insomnia has another plan for you. 

This truly is a vicious cycle, and your spirit can start to break when you feel like your health is out of your control. Some people with chronic illness suggest engaging in an activity you can completely control to help your mind and body remember that you do have a say in some things, even if they're small (3).

3. What if I have to cancel my plans? One person reported feeling anxiety every time she made plans because she couldn't know if her body would be prepared the day of. She feared having to cancel commitments, disappointing her friends, and even getting her hopes up for an activity she wouldn't be able to join. Another chronic illness warrior suggested doing everything you can before your plans to prepare, such as make breakfast and coffee ahead of time, lay out your clothing, and pack up any necessary items the day before (3). If possible, I would also try to schedule "light" days before and after any big plans. What can you do beforehand to ensure your body is as ready as possible? Also, giving yourself a rest day after a major activity can relieve stress and minimize physical symptoms. 

4. Will anyone ever truly accept me? Even though I ask this question more often than I'd like to admit, it is always so heartbreaking to hear other people doubt their worthiness for connection just because they live with chronic illness. We all deserve connection.

This fear can manifest in a number of ways. Single people may wonder if someone will ever fully accept them and their illnesses. Some people may even think they can't put the "burden" of their condition on someone else when they struggle to deal with it themselves (3).

Even people in romantic relationships fear losing their partners. Some people have said they're afraid that their partner may leave them if the illness becomes too difficult, even though their partner has reassured them of their commitment. People may also feel overlooked by their friends and family who all seem to be moving on in life without them. These are devastating thoughts, and one warrior says that she practices recognizing these thoughts as a product of her anxiety, not reality. She reminds herself of the strong connections in her life, especially with friends who also have chronic illness (3). 

5. What happens if I lose my support system? Many of us need support from other people to get through our everyday activities. A lot of us rely on a partner or a close family member, such as a parent, for that help. What happens if we lose that person we depend on (3)? This is another opportunity to practice separating our fear-based thoughts from reality. There is always the possibility of losing someone, and you may want to think about what safeguards you could put in place to support yourself if that happens, such as a life insurance policy or identifying another support person. 

It is also important to recognize when these fear-based thoughts manifest into negative consequences in your life. For example, if it feels traumatic every time your support person is not around, or if you are staying in an unhealthy relationship because that person helps you with everyday tasks, you may want to consider talking with a mental health professional.

6. Will I be able to support myself financially? We won't sugar coat it - chronic illness can be expensive. Between the appointments, medication, supplements, pricey dietary restrictions, gadgets that make life just a little easier, and any other hacks to manage your day-to-day activities, it can be incredibly frustrating to think about how much money it costs to barely get by. On top of this, a lot of people have lost, or fear losing their jobs to their illness (3). 

I was diagnosed with dysautonomia in my early twenties and being able to financially support myself has been an ongoing fear of mine throughout my entire adult life. Illness has caused me to quit a couple of traditional jobs, but I have always found a way to get by financially because chronic illness has also taught me to get creative with work and recognize there are several options on the spectrum of work between no income and a 9-to-5 office job. It is not easy to figure out work that works with our bodies, it's certainly not fair, and it probably doesn't look like the career we always imagined. In my opinion, however, it is definitely better than feeling like I don't have any options. We recommend reading our work and disability articles for more detail on how to find income streams that may work for you.

7. Will I have to give up on my dreams? Some people report not pursuing their dreams because they're afraid that their health complications will force them to fail, anyway. For example, one person said she delayed applying to graduate school because she is afraid her health will keep her from finishing the program (3). Another person encourages us to remember that it is possible to recover from what we see as failures (3), and most of us have probably already recovered from many failures in our own ways. As much as possible, try to give yourself credit for the day-to-day accomplishments in navigating this unpredictable life.

8. Will I be able to take care of my children? Will I be able to have children? I remember the first time I heard someone I deeply admired make the comment, "Disabled people shouldn't have kids." It broke my heart to hear someone close to me make such a hateful and misinformed comment. The truth is that many, many people with chronic illness and disabilities have children and are wildly successful parents. However, that doesn't mean we don't have questions about the experience. Will my children inherit my condition? Will I get sick during pregnancy? How will I find the energy to be a good parent?

We suggest you read our articles on pregnancy and parenting for more practical discussions about these questions.

In short, parenting is a tough job especially when health issues are involved. Like many things with chronic illness, you will likely face additional parenting challenges, you may have to get creative at times, and you'll have to remember to give yourself a lot of compassion in the process. And please, please try not to internalize horrendous comments - people living with disabilities make some of the most empathetic and successful parents I know. 

9. Will my health get worse with age? This is a big question for people with conditions, such as dysautonomia, that don't have much research on the prognosis of the condition over time (2,3). This question can threaten our sense of safety and identity: What will happen to me? How can I prepare if I don't know (3)? We don't have a time machine to see the future, but we can work to focus our mental energy on creating a meaningful present, as well as advocating for continued research and awareness.

10. Will I die from complications of my condition? This is a really, really tough to question to answer because most people have multiple chronic illnesses that present individually. Some people suggest doing things that remind you of life when this question begins to cause stress or anxiety, such as taking deep breathes, stepping outside to feel the fresh air, eating a favorite food, or chatting with a friend (3).

How Uncertainty Impacts our Health
Remember that term from the beginning of the article - illness uncertainty? It turns out that it is such a common phenomenon among people living with chronic illnesses that researchers have spent a lot of time studying it. Here are some highlights of their findings:

Illness uncertainty is defined as the "inability to determine the meaning of illness related events" (4). One author provides a compelling stop sign analogy to explain how this experience of uncertainty impacts our lives. In summary, we are able to function in our environments because we understand the universal meanings ascribed to different objects, experiences, and words. For example, consider the meaning of a red STOP sign in the US. All US drivers are aware that this sign means you must completely brake your vehicle when encountering it. Now, imagine that sometimes the STOP sign means "speed up" while other times it means "brake." This ambiguous meaning would certainly cause you and other drivers to be confused and anxious each time you encounter the sign. What if both you and another vehicle speed up and collide (2)?

Living with chronic illness is like driving with confusing, ambiguous road signs. Sometimes, your nausea means you didn't eat enough. Other times, it may be that you ate too much of the wrong thing. You've had days when exercise gets your blood flowing to improve your symptoms, and days when the exact same exercise causes your heart rate to skyrocket landing you in bed for the foreseeable future. No wonder researchers have spent a lot of time on this topic - how can we navigate our environments when our own bodies are fraught with this type of confusion?

To better explain illness uncertainty, researchers have broken the concept into four factors - ambiguity, complexity, deficient information, and unpredictability (2).  

1. Ambiguity refers to an event that has unclear or multiple meanings (2). Raise your hand I've you've ever started feeling cold-like symptoms and you are unsure as to whether you have an infection or it's a flare of your chronic condition!
2. Complexity occurs when we don't fully understand the mechanisms behind our conditions or the potential treatments (2). This is an all too familiar experience for people with dysautonomia because there is relatively little information about our condition, its causes, its prognosis, and best practice. 
3. Deficient information is related to complexity and is strongly connected to our interactions with others (2). Most of us have encountered doctors that don't know much about our conditions, as well as friends and family who provide well-meaning but misinformed suggestions (Have you tried yoga!?). 
4. Unpredictability probably doesn't need to be explained to you. It is our day-to-day experience of not knowing what, when, or how our bodies will act in nearly any circumstances. 

Needless to say, illness uncertainty is pretty inherent to living with dysautonomia. Researchers have found that it can contribute to emotional distress, anxiety, and depression. Research also demonstrates that participants who experienced pain due to unknown causes had worse perceptions of pain than people who experienced pain due to known conditions (2). This does not mean that people with illness uncertainty are dramatic. Rather, it means that there is a strong mind-body connection that links this pain and uncertainty.

Coping with Illness Uncertainty
Sometimes it can be therapeutic to have a term, such as illness uncertainty, to describe and normalize what you have been experiencing. Having a plan, or recipe, to manage your health can provide a further sense of control over your experiences.

1. Assess your recipe for optimum health. Research clearly demonstrates that addressing illness uncertainty should be considered an important part of our health management. When our day-to-day experiences feel beyond our control, it can help to have a plan that maximizes health as much as possible and gives us tools to manage future flares. Preventive aspects of your plan may include nutrition, movement, sleep habits, mental health support, rest, and maintenance medications (2). You may also what to consider what will help you manage flares, such as specific dietary items, as needed medications, and pain relief aids like a heating pad. 

2. Write down your recipe. Many of us already have a loose recipe for our health. We may not even recognize it as a health management plan because it has become so integrated into our day-to-day routines. By writing down your recipe, however, you can identify what ingredients serve you, what ingredients could be adjusted, and where you might want to add or remove some ingredients to encourage optimum health. We call this plan a recipe because there is not one magic cure for chronic illness, and it is often combinations of ingredients that make the plan, or recipe, beneficial to our health (2). 

3. Adjust the recipe as needed. Here's the thing about chronic illness - just when you think you've perfected your recipe for managing your condition, something in the recipe stops working as intended because your body and your environment inherently change over time. But, you worked so hard to perfect that recipe, you're not going to stop now!

If you have ever been attached to a health management plan that no longer serves you, you are not alone. I have watched (and experienced) how clinging to specific treatments, dietary regimens, medications, or any other ingredients can cause tremendous stress when we fear losing access to them, can give us negative side effects we aren't willing to see, or can cause incredible financial strain for little benefit. It is so hard to let go of our recipes when they no longer serve us because we invested a lot of time and energy into them and we don't want to lose the feelings of control and improvement they once provided to us. When these moments arise, try to remind yourself that you don't have to let go of your recipe, entirely, you just need to adjust it to fit any changed circumstances in your life.

Let's explain the importance of adjustment by returning to our recipe analogy, consider you are renting a beautiful cabin in the mountains and want to make your famous peach cobbler, but you forgot the peaches! The nearest store is a 45 minute drive, and if you go there now you'll miss the sunset, let alone this coveted time with your family. But, there are a few apple trees on the property. What do you do? You probably encourage your family to pick some apples, and you have a fun story to relive about the delicious apple cobbler you made from fresh apples on the property. And don't forget that  sunset you watched sink over the mountains as you all ate your cobbler on the back porch. Just like the cobbler, when you are in a situation in which you are missing an ingredient to your health recipe consider the alternatives available to you before you put yourself through a lot of work, time, and money trying to access the exact ingredient you think you need. Maybe you do need to put in the extra effort to get that critical ingredient, but it doesn't hurt to assess the situation first, fully and honestly.

Resources

Article Citations

1. Wright, L., Afari, N., Zautra, A. (2009, May). The Illness Uncertainty Concept: A Review. Current Pain and Headache Reports. https://www.researchgate.net/publication/24187615_The_illness_uncertainty_concept_A_review
2. Virant, K. (2019, April 15). Chronic Illness and Uncertainty: Living with the Unknown. Psychology Today. https://www.psychologytoday.com/us/blog/chronically-me/201904/chronic-illness-and-uncertainty
3. Colbert, C. (2019, March 7). 15 Common Types of Fear People with Chronic Illness Experience (and How to Cope). The Mighty. https://themighty.com/2019/03/fears-chronic-illness-coping/
4. McCormick, K. (2002).  A concept analysis of uncertainty in illness. Journal of Nursing Scholarship, 34(2), 127-131. https://pubmed.ncbi.nlm.nih.gov/12078536/

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

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

https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:2a6b6589-711c-49c3-bcc1-5ff205b1e58c