Living with a Chronic Illness and Your Mental Health
Living with a chronic illness can be a frustrating and harrowing experience. It can cause financial strain, put pressure on relationships, and can also be psychologically distressing. A diagnosis can result in feelings of sadness, despair, shock, and panic. Due to the difficulties caused by chronic illness, those living with one can develop mental health conditions such as depression or anxiety.
When we are ill, we expect to deal with the illness and then it will pass. With a chronic condition, it may never actually pass. You can have days during which you feel better, but it is something that you may have to live with for some time.
Living with a chronic illness
Losing control
Receiving a diagnosis of a chronic illness makes some people feel like they have lost control over a large part of their life. A chronic illness can cause a significant amount of uncertainty. You may not be able to predict how you will be feeling from one day to the next. It can affect your ability to make social commitments, meet deadlines, or attend school. Your body may not ‘work’ as it used to, or does not always do what you want it to do. You may feel like you do not have control over your body, and that it has betrayed you by succumbing to illness.
Adjusting
Becoming chronically ill requires a lot of adjustment to a different way of living. You have to accept that the way you live life may have certain limitations. You may have to let go of goals, dreams, what you thought you would be doing, or the life you had planned. It might take you longer to do everyday things than before. There may be some tasks or activities that you can no longer do at all. Your level of independence may have decreased due to your illness. This can be frightening and stressful.
If your chronic illness brings with it chronic pain or fatigue, this adds an extra layer of adjustment and hardship.
Dealing with the side effects of medicines can also be physically and emotionally challenging.
Re-prioritizing Your Time
Your time, and perhaps that of a friend or family member who is accompanying you, may be spent waiting at doctor’s offices. You may be waiting for a test to be done, and then have to deal with the anxiety of waiting for your test results. You may spend more time than you care to resting, feeling tired, reading about your disease, or learning about the medications you are taking.
Body Image
A chronic illness may also cause changes in your physical appearance. This may lead to issues with body image and self-esteem.
Family and relationships
The stress of a chronic condition affects not only you, but also your relationships and the people that are close to you. You may feel guilt or resentment over how your illness affects your family. It can affect your dynamics with your partner. They may be struggling to accept the change in lifestyle and their new role as a possible caregiver. Or, you may find it difficult to be there for your children – physically or emotionally – in the way that you want to be.
Family therapy can help people find ways to support each other while looking after themselves as well. Therapy for children or therapy for teens can guide young people through their feelings and concerns about a parent who has a chronic illness.
Loneliness
People who live with a chronic illness often experience loneliness or isolation. This can come from the feeling that no one else understands what you are going through. Loneliness can also stem from reduced social activity as you may no longer have the energy or feel well enough to socialize.
Chronic Illness and Depression
For some people, depression may develop after receiving a diagnosis. For others, depression can be linked to their illness. Depression is common in people with some autoimmune diseases or illnesses like Parkinson’s, HIV/AIDs, heart disease, or Alzheimer’s.
The symptoms of depression may persist for longer in someone with a chronic illness. People may be inclined to overlook their depressive symptoms as they believe that it is common for someone who is chronically ill to be depressed. Still, if symptoms persist for more than a few weeks, consider getting help from a mental health professional. Below are common symptoms of depression.
Persistent low mood, sadness
Loss of motivation
Withdrawing from friends and family
Lack of interest in daily activities, hobbies
Significant changes in appetite
Difficulties with sleep
Low self-worth, guilt
Trouble focusing or making decisions
A loss of hope
Thoughts of death or suicide
Issues in your relationships
Fatigue
Headaches, stomachaches, digestive issues
Irritability, anger, frustration
Feeling powerless, out of control, or helpless
Certain aspects of a chronic illness can also make you feel like your personal boundaries both physical and emotional – are being trampled on. Medical procedures, tests, and examinations can negatively impact our dignity. Friends and family may offer unwanted advice, or may need to do things for you that you are not comfortable with.
Blaming yourself or others for your condition can add to feelings of depression.
Chronic Illness and Anxiety
A chronic illness interferes with your daily life and how well you function. It brings with it uncertainty, emotional toll, and stress. You may be worried about the outcome of your treatment. You may be fearful of what your future will look like. There may be feelings of guilt about how your illness is affecting your partner, children, or other loved ones. If your performance is affected at work you may feel pressure and have financial concerns. In this way, being chronically ill can cause anxiety disorders in some people.
Below are some common symptoms of anxiety.
Shallow, rapid breathing
Sweating
Trembling
Gut pain or other digestive issues
Muscle tension
Nausea, butterflies
Dizziness
Racing, intrusive thoughts
Feeling extremely nervous, worried, or fearful
Fatigue
Difficulty sleeping or staying asleep
Feeling overwhelmed can also lead to panic attacks. A panic attack is an intense episode of anxiousness. Your heart may be beating hard and fast, and you may even feel like something will happen to you. It is an extremely heightened combination of anxiety symptoms.
It can be exhausting to explain to others about your illness, why you cannot do something, why you will be late, or how you are feeling. This can be particularly challenging if you have a condition with which you look relatively fine on the outside. For example, the symptoms of a chronic illness like endometriosis are often not visible, but they can be debilitating and difficult to explain.
Manage the Parts of Your Life You Do Have Control Over
There are some things you can do to look after yourself while still following your doctor’s orders.
Spoon Theory
One way to communicate what it is like living with a chronic illness and the limitations that come with it is ‘spoon theory’. This was developed by writer Chritine Miserandino to help her describe to others what it is like to have a chronic illness. The theory explains that having a chronic illness is like have a limited number of spoons to use throughout the day. A healthy person will have an a very large amount of spoons. A chronically ill person, however, has a limited number of spoons. The number of spoons they start their day with depends on how they are feeling, or their level of pain, for example. Each task they do throughout the day uses up a certain number of spoons. At the end of the day, they may have no spoons left, and there is no way to get more for that day.
So, their day is dictated by how many spoons they start with in the morning. This is a metaphor for how someone’s chronic illness dictates the shape and pace of their daily life.
Self-care
Self-care is one of the most commonly touted strategies for well-being. However, it is the practice that many of us get to last. If you find it difficult to incorporate the self-care habits discussed here into your daily life, try taking it one good habit at a time. Small steps can make the goal seem more achievable, especially if you are struggling with chronic ill-health. There are also resources online, such as mental health worksheets, that can guide you through self-compassion and understanding your emotions.
See if there are ways in which you can improve your diet and nutrition. Make the shift towards healthier foods and eating habits. Consult with your doctor or nutritionist on which foods are best for your health.
Exercise, in whatever form you do it, is beneficial. It is important to keep moving. Do what is safe for you within the scope of your health, and consult with your doctor before starting any fitness program. Sometimes all it takes is a short walk to lift our mood.
Get the right amount of quality sleep.
Keep hydrated.
Try meditation, mindfulness, or breathwork. These practices can help reduce stress and the symptoms of depression and anxiety. They can also help improve your mind-body connection, which is how your mental well-being is linked to your body’s well-being.
Learn something new or take up a hobby. Try to find activities that make you feel good. Depending on how much your body allows you to do, you could read, learn to knit, play cards, play scrabble or word games online, do crosswords, or watch something funny. If you can, volunteer your time in some way to help others who have a chronic illness.
Educate yourself on your illness. The more you know about what you are dealing with, the better you will be able to manage it. Learn about the side effects of your medicines, if you are taking any. Talking to other people who are going through the same thing, such as those in a support group or online forum, may give you ideas for coping.
Getting Help
Support groups can bring together people that have the same struggles. With a support group you have the chance to talk with others, and perhaps find a few people who can relate to what you have gone through. You may find the methods another person has used to cope useful to your situation.
Along with following the advice of your doctor, it may help to speak to a mental health professional. Therapeutic services such as depression therapy, anxiety therapy, or relationship counseling can help you work through your feelings and process the changes you and your family must accept. Often those diagnosed with a chronic illness feel anger and resentment about their diagnosis. Individual therapy can help you develop healthy coping mechanisms for dealing with difficult thoughts and emotions.
Trust Mental Health has a growing team of BIPOC therapists that offer mental health therapy in California. We are experienced in offering a number of therapeutic services, and work with children, teenagers, young adults, and the elderly. Contact us today for a free 15 minute consultation. We will match you with a therapist best suited to your needs.
FAQs
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Chronic illnesses can be a significant source of stress, and can lead to feelings of helplessness, despair, anxiety, or depression. The constant challenges of managing symptoms, side effects of treatment, and disruptions to daily life can contribute to the emotional and mental strain.
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Therapy can provide coping strategies and emotional support. The gentle guidance of a therapist can help you process your feelings, learn new coping mechanisms, and feel understood.
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Many resources are available, such as support groups (both in-person and online), organizations related to specific illnesses, mental health professionals, and informational websites. Your healthcare provider can also provide recommendations.
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Spend some time reflecting on what you can control, such as self-care, and then do a few self-care activities. This can include self-compassion practices, connecting with your support network, reaching out to a therapist, and learning techniques such as meditation, mindfulness, and breathwork.