Illness uncertainty is one of the most stressful yet common issues to deal with in the chronically ill community. The daunting reality of not knowing what’s happening with your body at a given moment impacts more than 60% of Americans living with chronic conditions. Let’s explore how to deal with illness uncertainty so that you can take care of your mental health along the way.
What is Illness Uncertainty?
Illness Uncertainty Theory recognizes it as the “difficulty determining the meaning of illness-related cues or events” (National Library of Medicine). It is the state of confusion and worry that comes when experiencing new or unexpected health symptoms. This is likely to occur more when living with a diagnosed or undiagnosed chronic health condition.
The illness uncertainty makes you question the symptoms, leaves you wondering how to deal with it and whether or not it will interfere with your quality of life.
You begin to feel unsettled, mentally bouncing back and forth to treat symptoms, get answers or bear through them for an unclear amount of time. I often explain to my clients that it can leave you feeling like you’re living your life with a big question mark on your forehead because you’re not sure what’s causing the symptoms or how long they’ll be there.
It’s a period of time where you literally feel out of control of your body, even when you’re doing all you can to take care of it. Illness uncertainty often makes you doubt whether the strategies and treatments you’ve been using have been helpful, bringing on a whirlwind of possible appointments and questions that sometimes go unanswered.
Here are some common experiences that illness confusion can cause.
Racing Thoughts and Panic
Illness uncertainty takes a toll on you mentally, especially when new or unexpected symptoms show up. Many times you see this in the form of racing thoughts, constant worries about what will happen, thinking up worst case scenarios (i.e., “I’m going to die”), panic attacks, and having a hard time staying present during important moments.
I usually describe racing thoughts as being on a hamster wheel that you can’t get off of. You’re running at full speed the second you experience a new symptom without a break for a prolonged period of time. You want to get off the hamster wheel (illness uncertainty) by getting answers or to make the symptoms go away. So that often leads to doing things to make that happen, oftentimes keeping the worry cycle going.
Common Racing Thoughts That Come with Illness Uncertainty
- “Why is this happening?”
- “Did I push too hard?”
- “Should I cancel my plans?”
- “Will they be mad at me for canceling again?”
- “Will I get fired for taking another sick day?”
- “They’ll just think I’m lazy or making this up.”
- “Am I overreacting?”
- “It can’t be that bad.”
- “Oh my gosh, I feel like I’m going to die.”
- “Something is wrong with me.”
- “People are getting tired of me being sick.”
- “This is going to be me for the rest of my life.”
- “I know I haven’t talked with my doctor, but the internet says that I have cancer.”
Impact of Racing Thoughts with Illness Uncertainty
Racing thoughts increase anxiety and stress hormones in your body, leaving your body in a more tense and unsettled state. The additional stress responses your body has with the racing thoughts creates a vicious cycle, increasing chronic pain and the intensity of the symptoms you were already experiencing.
Illness uncertainty responses often result in strategies to get answers, including online searches and seeking advice from others. While getting answers can help relieve health-related worry, too much advice seeking and online searches outside of discussion with your medical provider can promote more worry. In fact, you’re at higher risk of receiving false information this way.
Bring any information you find through your research to your doctor to gain clarity and a plan to respond to your symptoms.
More Health Symptoms and Discomfort
Feeling stuck in a state of illness uncertainty puts you at risk of experiencing more chronic health symptoms or experiencing them more intensely. The Pain Cycle illustrates that your stress hormones put you at risk of noticing higher levels of pain, having the urge to avoid life activities to resolve the issue. During this process your body also responds in the form of gastrointestinal symptoms (stomach pain, diarrhea, constipation, nausea, vomiting), muscle tension, faster breathing and heightened negative emotions (depression, anxiety, irritability, helplessness).
So that hamster wheel I mentioned isn’t just a mental thing – it’s physical as well. It’s mentally and physically exhausting and can make you sicker when you don’t know what’s going on with your body.
Illness Uncertainty and Blaming Yourself for Symptoms
An unfortunate response that many chronically ill people experience is blaming yourself when you have new or ongoing symptoms. Our society thrives on ableist ideology that makes people think that if something goes wrong, you’re inherently the one to blame. I mean think about it… How often have you heard advice that focuses on what you can do differently, how to cure your chronic illness and live a life of wellness?
Within many of those ableist ideals, it’s implied your health condition and the symptoms that come with it are the result of you not working hard enough or taking the “proper steps.” Illness uncertainty opens the door for this type of shame based thinking that makes you blame yourself when it’s really not your fault.
The messages of blame often come from societal stigma and people that make you feel unsupported. These messages are embedded in our society and can easily sink into how you feel about yourself because you notice it in commercials, social media ads, messages from your toxic medical provider and even friends and family members. It’s no wonder these thoughts come automatically to your mind. They’re everywhere you go.
Self-Compassion Helps You Deal with Illness Uncertainty and Self-Blame
Oftentimes you’re literally following your health plan, meeting with countless doctors, taking the prescribed meds and trying to rest, but it doesn’t always turn out the way you plan. Take it from me, blaming yourself for your symptoms likely will not make yourself feel any better. In fact, it makes you feel worse.
Respond to yourself with compassion during your period of illness uncertainty because judgmental responses will only make you feel worse over time (which is not what you’re looking for right now). Remind yourself that you’re doing the best that you can in the moment. If you discover that there are adjustments you can make along the way, allow yourself to pivot with the new information you have and move forward.
Illness Uncertainty and More Medical Appointments
Illness uncertainty often means you’re scheduling appointments with one or more doctors to seek answers and treatment. These appointments can add up quickly, sometimes resulting in multiples within one to two weeks time.
The ongoing process of scheduling medical appointments becomes stressful as availability is limited, requiring you to call often asking to be placed on a waitlist for earlier canceled appointments. This process feels like a full-time job and is difficult to do when you’re already feeling exhausted and experiencing other health symptoms.
Stress About Test Results
Before you get to the appointment there is already a range of worries going through your mind including, “Is there something wrong?, “What happens if they don’t find anything?” Truthfully, some of these worries can make even the “strongest” person consider canceling the appointment for fear of getting bad news.
To add insult to injury, illness uncertainty also feels overwhelming and helpless when your doctor doesn’t have the answers you’re looking for and the test results come back clear/inconclusive. For many people, no result is more stressful than finding something, because having an answer can provide relief and a possible plan to deal with it.
Now this means that you’re leaving the appointment with no answers, more questions, more doctor involvement by additional follow-ups or referral appointments, second and third opinions, more tests and prescriptions to treat symptoms instead of a resolved problem.
I get it. It’s such a rollercoaster that you wish you could get off of.
Continue asking questions to your doctor and keeping a checklist of symptoms between appointments. Consider scheduling an appointment with a different provider if you disagree with the results or don’t feel that they’re a good fit to help you.
Illness Uncertainty Making You Doubt Yourself
After a long process of not getting answers with your health symptoms, it’s common to lose trust in your judgment and question whether or not you’re making things up. “Good days” with minimal symptoms throw you off and make you wonder if you’re being dramatic and need to “get over it.” The cycle can become toxic at this point, especially if you feel people don’t believe you.
Short answer – You’re likely not being dramatic or making things up. The process is taking time and sometimes telling yourself that you’re handling it poorly is the only answer that makes sense to you when nothing else seems to be working.
Risks of Not Believing in Yourself with Illness Uncertainty
The self-doubt that comes when dealing with illness uncertainty increases your risk of progressive health issues and more strain to your mental health. Ignoring it and writing it off may initially help you cope with what’s out of your control, but it leads to more problems later. Self-doubt puts you at risk of feeling more lonely and isolated.
Many people begin to mask (or cover up) their symptoms and avoid talking about it for fear of being told that nothing is really wrong. Although cutting unsupportive people out absolutely helps you feel safe, be sure to keep yourself around people that actually enhance your life and help you carry the fear as you await answers.
Focus on What You Know with Illness Uncertainty
At a time when there is so much uncertainty, one of the most important things to do is to focus on what you DO know. Here are some tips to remember as you seek answers:
- Continue following your chronic illness management plan until confirming next steps with your doctor
- Monitor your symptoms by keeping a list on your phone (take to your doctor)
- Limit time searching for symptoms and causes online
- Keep your typical routine if possible to feel a sense of normalcy, and allow yourself to slow down and make adjustments as necessary
- Request accommodations with work or school if symptoms begin to interfere with completing tasks as needed.
- Protect your energy from people or situations that promote more stress (use that energy on sources of encouragement and fulfillment instead)
- Connect with people who understand and offer support (i.e., chronic illness group, caring friends and family).
- Schedule an appointment with a Chronic Illness Therapist if illness uncertainty is becoming too much to handle on your own.
- Locate helpful resources in your community specifically for people and families living with chronic conditions and disabilities.
- Engage in activities that promote calm and reduce your stress. This helps to reduce pain and the mental suffering that comes with illness uncertainty.
Next Steps for Adjusting to Life with a Chronic Illness
I help individuals and families living with chronic illnesses and the emotional toll they can bring. Therapy can help you find meaning in your life as you seek answers about your health. Not having the answers is unsettling, and therapy gives you a plan and guidance to move forward with a sense of calm and confidence.
Whether you’re looking for one-on-one, family or group counseling, I’d love to help. You can schedule your first appointment with me by booking a free 15-minute consultation.
