Living with a diagnosis of a chronic illness is stressful for a variety of reasons. But what about when you’re dealing with an undiagnosed chronic illness? Let’s discuss some mental health strategies that can help you move forward as you seek answers.
Common Assumptions of Dealing with an Undiagnosed Chronic Illness
#1 – You Can Easily Receive a Diagnosis in a Short Amount of Time
First, let’s address the elephant in the room. For people not experiencing chronic health symptoms, it is often assumed that going to a visit with your doctor will immediately confirm a diagnosis. But that’s not always the case. In fact, the average amount of time it takes to receive a diagnosis is around six months from the first appointment time. And the process to receive a diagnosis for a rare condition can take up to 7 years in the United States.
The reality that it can literally take years to receive a diagnosis can be daunting, especially when you are living with severe health symptoms with limited answers. This process often leads to multiple hospital visits, countless appointments seeking a second, third or fourth opinion from medical professionals, trying all of the lifestyle changes imaginable and even trying to convince yourself that it’s not that bad as a way to cope.
It sometimes requires seeing multiple doctors over a number of years while living with an undiagnosed chronic illness before getting answers.
#2 – You Shouldn’t Be as Stressed if You Don’t have a Confirmed Diagnosis
Another assumption is having a confirmed diagnosis is more stressful than not having one at all. I believe that the experience remains stressful whether you have a confirmed diagnosis or not.
Receiving confirmation of a chronic condition is overwhelming and can also give you a sense of relief. Why? Because an official diagnosis increases your chances of having answers to your symptoms and the possibility to make a plan to move forward with it.
Living everyday with an undiagnosed health condition doesn’t allow you any clarity. Instead it feels as if you’re guessing what’s happening with your body. Meanwhile, you’re trying to coexist with the rest of your life obligations while sick with no answers or treatments.
At this point, you’re facing every day and situation with a big question mark over your head because you’re not sure how your body will respond at a given moment. This daily experience promotes stress, worry, frustration, dread and even helplessness when you don’t have the answers that come with a confirmed diagnosis. No one wants to live with a confirmed diagnosis, but it helps to know what you’re dealing with.
My Personal Experience Dealing with an Undiagnosed Chronic Illness
I remember how hard it was for me dealing with an undiagnosed chronic illness. My personal health journey was difficult with a host of wrong diagnoses and confusion. The insane number of doctor appointments, being told I was “just stressed” and receiving “clear” medical testing results was overwhelming, defeating and exhausting. I was given recommendations to change my eating habits, exercise more often and take more supplements because there was “no sign” that I was living with a chronic condition. So I must have been doing something wrong and causing my symptoms.
Sound familiar? I was experiencing medical gaslighting and didn’t even realize it at the time.
My mind was working in overdrive thinking about my future, worrying if I would be happy or live a life without symptoms again. I worried about whether I was going to die young and never have a family of my own. I sometimes thought about how my health decline would affect other people around me.
This often kept my mind focused on worse case scenarios for the future instead of being in the moment. So much time was devoted to worrying about my health that I wasn’t really present with my friends and family as I wanted to be. And although this was a natural, common response to having an undiagnosed chronic illness, it was a hard way for me to live at the time.
Little did I know that I was surviving – not living.
It took 6 years from initial symptoms for me to receive a diagnosis and treatment. Now 11 years later as a Licensed Mental Health Therapist with a chronic health diagnosis, I make it my life’s purpose to help people cope with the uncertainty and stress that comes with an undiagnosed condition.
Here are some mental health strategies for dealing with an undiagnosed chronic illness.
Set a Time Limit on Your Worries
A helpful mental health strategy to cope with the norm of being swept away with your worries is to set aside intentional time to focus on your worries. Set a timer for 5-10 minutes to be all in with your worries, and once the timer goes off return to focusing on connecting in the here and now with people, places and things that are important to you.
An example of this is to set a timer when you have the urge to search for your symptoms online (which is only helpful in small increments and is known to increase worry and panic most times). Once the timer has ended, close the internet search and move on to something else that helps you feel good about yourself.
Check out other things to avoid as you await your health diagnosis.
Grounding Exercises
Grounding exercises like the 54321 is a mental health strategy that allows you to disconnect from racing thoughts and be present through using your five senses. The exercise involves you noticing 5 things you can see, 4 things you can feel, 3 things you can hear, 2 things you can smell and 1 thing you can taste in your current environment. Actively engage these 5 senses to pull your mind and body into the moment and help you calm down.
Think of grounding exercises as an anchor on a boat at sea. When the winds and water are blowing strong and fast (like your racing thoughts), place the anchor down to keep you grounded and unmoved until the storm settles. The numbers or tangible items you focus on during the exercise serve as your anchor that keeps you from being swept away by your racing thoughts and worries about your health symptoms.
Breathing Exercises
Breathing exercises are an essential mental health strategy known to decrease stress, improve concentration, decrease pain, help you remain present and feel emotionally in control.
There are a range of different breathing exercises that you can use to help improve your mental health as you cope with an undiagnosed health condition.
Examples of breathing exercises include the 4-7-8, diaphragmatic breathing, box breathing and mindful breathing.
Mindfulness
Mindfulness is a mental health technique that helps you connect with the present moment (internally and externally) without judgment. Some of the many benefits of practicing mindfulness include improving mood, becoming more self-aware, and having more sense of control over your responses to stress, health symptoms and thoughts.
This mental health strategy helps you learn to move forward with your symptoms rather than fighting them (mentally and physically) and experiencing a stronger pain response. Common mindfulness practices include the STOP Technique and the Body Scan exercise.
A common assumption about mindfulness is that you’re expected to hyper focus on the symptoms you have, making you feel worse than when you started the exercise. This is false. Instead you allow yourself to be gently aware of the symptoms without judging them or yourself as they come and go.
Yes, it is very difficult to be present in your life when you’re experiencing so many symptoms, health-related grief and disappointments. So give yourself some grace if the mindfulness practice is hard for you when you first start using them. Take time to practice this skill every day so that you can get stronger and more confident with it over time.
Participate in Relaxing Activities
The Mayo Clinic reports that participating in calming activities benefits your physical and mental health. Calming activities help to do the following:
- Slow heart rate.
- Lower blood pressure.
- Slow breathing rate.
- Improve digestion.
- Control blood sugar levels.
- Lessen activity of stress hormones.
- Increase blood flow to major muscles.
- Ease muscle tension and chronic pain.
- Improve focus and mood.
- Improve sleep quality.
- Lower fatigue.
- Lessen anger and frustration.
- Boost confidence to handle problems.
Relaxing Activities to Use with an Undiagnosed Chronic Illness
- Deep breathing exercises
- Progressive relaxation
- Swimming
- Taking a warm bath
- Sitting in the sauna
- Cuddling with your favorite blanket
- Listening to soothing music
- Setting the mood to be calm and cozy in your space (candles, dim lights)
- Sitting or going for a calm walk in nature
- Drinking a tasty warm or cold beverage
- Massages
- Exercise
- Gentle stretching
- Yoga
- Tai chi
- Going for a drive in a scenic area
These can be everyday activities that you build into your routine that help you relax and be in the moment, calming worries about health uncertainty. Be sure to speak with your doctor if you have questions about how to incorporate some of these activities in your health plan.
Check out these strategies to boost your mood and relax during periods of intense chronic health symptoms and flares.
Keep Notes of Your Observations
Keep a list or log of health symptoms on your phone or notepad to monitor what’s happening when dealing with your undiagnosed chronic illness. This can be helpful if any changes of symptoms or intensity occur. Bring these notes and a list of questions to ask your doctor to your next appointment. Your doctor may be able to run some tests, collaborate with other providers and make the necessary specialist referrals on your behalf.
Your observations are essential to receiving the clarity you need. So don’t ignore your symptoms or assume that you’re making it all up. Keep going.
Here are some ways to cope with your doctor’s appointment anxiety.
Set Boundaries with Yourself
Setting boundaries is hard when you’re unsure of what’s happening with your body, but it’s important to have a few in place to protect your mental health as you await confirmation with your physical health.
Boundaries are limits that you proactively set for yourself that guide how you respond in different situations, even in moments of uncertainty. An initial boundary that comes from listening to your body is stopping to consider how you feel and what you need before moving forward to do something. That means, saying “no” to yourself may be the best answer sometimes.
See how I mentioned that this can be difficult?
Yep, saying “no” to self is not fun, but it protects you from overextending yourself beyond what your body and mind can handle.
Other boundaries for dealing with an undiagnosed chronic illness come in the form of pacing yourself through activities, being flexible with the amount of time needed to do things, distancing yourself from unsupportive people and maintaining a gentle daily routine.
Here are some other chronic health management tips to help you through tough days.
Join Communities of People with Similar Illnesses and Symptoms
Your next mental health strategy for an undiagnosed health condition is to join a community of people experiencing similar health symptoms. This can be in the form of support groups (therapy or online platforms) and health organizations.
Dealing with an undiagnosed health condition can be a lonely experience when no one else around you understands what you’re going through. The doctors are struggling to figure out what’s going on and loved ones are struggling to support you without answers.
But you don’t have to deal with the uncertainty of your health status alone. A supportive community helps protect your mental and physical health over time, predicting better outcomes.
As a Chronic Illness Group Therapist myself, I’ve observed the power that comes from talking with other people about your health worries. You’ll also find that you can receive encouragement, helpful tips, firsthand doctor referrals and sometimes a good friend or confidant.
It can be scary to think about sharing your feelings with strangers, but you’ll often discover that the other people in the room have experiences very similar to yours (i.e., struggling with symptoms, strained relationships, feelings of worry and sadness, medical trauma and feeling dismissed by toxic doctors). This community can help you move forward feeling less alone and overwhelmed having to explain yourself to people.
You deserve this type of healthy connection led by a trained professional.
Enroll in a group for chronically ill adults and teens today.
Speak with a Mental Health Professional
Mental health therapy is a powerful tool to help you learn more mental health strategies while living with an undiagnosed condition. A Chronic Illness Therapist or Clinical Psychologist can help you talk through the connections between your physical and mental health. A referral to a Psychiatrist can help you determine if medications can help improve mood as well.
Another benefit of going to therapy relating to your undiagnosed condition is that you can oftentimes adjust how to attend based on how you feel, using a combination of in-person or confidential virtual platforms to speak with your therapist. Your therapist can also collaborate with your medical doctor to provide support and guidance as you seek more information about your health condition.
Here are some additional chronic illness resources that could be helpful for you.
Moving Towards Hope with an Undiagnosed Chronic Illness
As I’ve mentioned a few times now, living with stress and uncertainty about your health is no cake walk. Each day is a journey full of ups and downs as you await information to address your symptoms. Be sure to practice self-compassion as you wait for answers.
And no, I don’t mean just tell yourself that “everything is going to be okay” and to “only think positive things.” Positive thinking can be helpful here, but self-compassion also means to treat yourself with kindness as you figure things out. There will be moments when you’re experiencing sadness and waves of anger relating to how your health has impacted your life, and you deserve to be uplifted rather than torn down in these moments.
Take it one day at a time.
Next Steps for Learning Mental Health Strategies with an Undiagnosed Chronic Illness
Thanks for taking the time to read this blog post. I’m Alicia Dorn, a chronically ill Mental Health Therapist who provides therapy services to adolescents, adults and their families dealing with diagnosed and undiagnosed health conditions and the emotional toll that it can bring.
We can talk through your personal experiences, practice new helpful mental health strategies and help you bring more function in your life – even with a chronic health condition. Although you cannot control certain aspects of your health right now, the next steps you take from here can help you feel a sense of control and joy in other aspects of your life.
I’d be more than happy to help you get there. Schedule your free 15-minute consultation call with me today.
