Living with a chronic illness is much more than just the chronic illness. There are many emotional factors that come into play with chronic illness. Not only is it challenging in navigating the chronic illness itself but also managing the mental health aspects of this. While medical discussions often focus on managing physical symptoms, the emotional strain of chronic conditions can be equally challenging to navigate. Let’s explore some of these emotional challenges and discuss strategies that can be beneficial.
The Hidden Weight of Chronic Illness
Chronic health conditions present a host of unpredictability. It’s very common to wake up feeling good about the day and prepared for the full schedule that lies ahead, but with a sudden flare of symptoms, the whole day may be lost. This unpredictability can then affect your emotional health. It can become difficult to make plans for fear of having to cancel them. It can be overwhelming to frequently have to make schedule changes. This can cause feelings of extreme guilt, distress, anxiety and isolation. These emotions, even though they are completely typical and usual can hinder emotional wellbeing. I frequently see clients that have significant distress because of needing to cancel plans with friends and families because of unexpected doctor appointments or not feeling well. This then becomes a cycle of not wanting to make plans for fear of cancellation, guilt, and isolation.
Another common experience associated with chronic illness is the profound sense of loss. There's grief for the life you had before and anguish for limitations that may now be put in place. Looking back, it is daunting to see how things have changed. Not being the person that once was and having many aspects of life that need to be modified to accommodate physical symptoms, can bring strong feelings of bitterness, hopelessness, and resentment. These feelings are normal and completely valid. In my work, I like to address the sense of loss and grief, and by acknowledging this and working through the parts of life that may have ended, we can work on healing
It is also common to experience anxiety and worry about what will happen in the future, not just related to the chronic illness, but about life. It is though life has been turned upside down. Concerns and apprehension are aplenty. Never ending thoughts and fears cause significant emotional difficulties. I frequently hear from clients about these anxieties. “Life is too hard” “will life ever be the same?” “Will I ever be happy” are some of the many questions clients ask themself and ruminate on. By identifying these questions and worry, we help change our thoughts process and work through the anxiety.
Understanding Emotional Cycles
Just as chronic illnesses often have flares and remissions, your emotional response to living with chronic illness tends to move in cycles. At one moment, there may be a sense of tolerability and acceptance in managing the chronic illness and progress in life. Then at times it may go to opposite extremes, and there are feelings of rage, contempt, emptiness and helplessness. These fluctuations are normal and understanding this can help reduce additional stress.
Breaking Through Isolation
Feelings of isolation are a very common experience in chronic illness. There are many times when it feels it is necessary to limit interactions and social engagements, because of physical symptoms. Additionally, even when family and friends are around us physically, having someone that truly understands is hard to find. It causes many mixed feelings of loneliness, resistance and disconnection with others which deepens the emotional burden.
Consider reaching out to others who share similar experiences through support groups, online communities, or chronic illness advocacy organizations. These connections can provide validation, practical advice, and the profound relief of being truly understood. There are several online support groups that I encourage clients to look into which include Chronic Disease Coalition (https://chronicdiseasecoalition.org/), The Mighty, (https://themighty.com/), and Patients Like Me (https://www.patientslikeme.com/).
Practical Strategies for Emotional Wellbeing
- Validate Your Feelings
It is important that you identify and acknowledge your emotions. It is ok to feel what you feel. Give yourself permission to experience all the emotions that are coming up for you. Your responses are valid. Give yourself grace. You can engage in writing down different feelings and emotions in a journal. Journaling doesn’t have to be writing out long lengthy ideas, but it can be as simple as making a small list of what your emotions are in the moment. Letting yourself feel the emotion and moving on from that can be powerful
2. Practice Compassionate Self-Talk
Pay attention to your thought processes. Instead of beating yourself up for what you can't do, try speaking to yourself with the same kindness you'd offer a friend. Use mantras or saying such as “I am doing the best I can in this moment.” It is preferred to not only say these things in your mind but say them out loud. Speaking our positive thoughts out loud can help trick our brains to think that someone else is saying these positive things, which improves our emotional health.
3. Develop Adaptive Coping Strategies
Identify activities that help you process emotions in ways that work within your energy limits. This might include journaling, gentle movement, creative expression, or mindfulness practices. Remember that what works for someone else might not work for you, and that's okay.
4. Set Realistic Expectations
Learn to pace yourself and set boundaries that honor your needs. Try to set up routines that are achievable and productive. Factor in time for rest and self-care. Creating realistic expectations helps reduce feelings of frustration and failure. Planning a specific part of your day, typically when first awakening can be helpful in setting the tone for the day. Engaging in prayer, meditation and self-reflexion can be powerful ways to engage in self-care as you begin your day. Then, throughout the day, allow yourself 15-30 minutes a few times to just sit and be. Do not use this time on social media, but rather on tasks such as journaling, making a list of tasks for the rest of the day, or using grounding and deep breathing techniques. These small breaks can provide a renewed source of energy to get through the day.
Working with Healthcare Providers
It is imperative to have emotional health addressed as well as the symptoms of chronic illness. It can be hard to share concerns with healthcare providers, but your healthcare team will assist with resources and services when they are needed. They may recommend resources such as counseling, support groups and other treatments that can be specific to people with chronic health conditions. If resources are not automatically offered to you, don’t hesitate to ask! It’s ok to be an advocate for yourself and get the help you need. In my experience, the more knowledge and resources my clients have, the easier it is to navigate the journey
Finding Purpose Within Limitations
Living with chronic illness often requires redefining what a meaningful life looks like. This too will fluctuate with time and emotions. There will be some days that just getting to the end of the day is all that’s achievable, but other days are spent following life-long dreams. Slight changes in plans may have to be made to fulfill happiness, and other times, chronic illness can cause eye opening moments where values and meanings of life are put into a realistic perspective. Trying to find a specific purpose by exploring options and keeping an open mind can be fulfilling. I often offer clients to spend an appointment brainstorming different activities that they have done and enjoyed, would like to try but haven’t, and new ideas that they may not have considered before. We work together to set goals of trying new activities and hobbies, while taking into consideration possible limitations.
Looking Forward
Even though chronic illness can bring significant changes to life, it is possible to build emotional resilience and come out stronger. This means that there will be struggles and many fluctuating emotions, but by learning new skills, developing tools and engaging in support systems, challenging times can be navigated a bit easier.
Remember that healing includes finding new ways to get through life. Healing consists of embracing challenges, then finding means to make a change. Don’t look at others and compare oneself but remember the small gains that are personally made. Aiming for 1% growth every day will make tremendous strides in life.
Conclusion
Living with chronic illness is an overwhelming journey that affects many aspects of life.
By being able to acknowledge different emotions and accept them as they are, it becomes easier to build new skills and strategies, lean into supportive connections and give yourself grace and compassion. Remember, it is just as important to prioritize emotional wellbeing along with physical symptoms of chronic illness. You don’t have to go through this alone. Be patient with yourself as you develop new ways of coping.