Every person with CF is unique and will have their own challenges within their care and life. However, there are some common obstacles the CF population will face that you may relate to or experience. Below you will find some factors that may challenge your mental health and put your emotional wellness to the test:
Whether you are newly diagnosed or have lived with CF, the stress of having to financially support your health can be overwhelming. Taking time off work due to your health, communicating with your insurance provider and the added financial burden of treatment is to be expected. This can put some strain on your mental health as it may place you in a constant state of worry about how you will be able to support your care.
As an individual living with chronic illness, it can be difficult to uphold other aspects of your identity especially when CF plays such a huge role in your life. Making time for the things you enjoy and spending time with your loved ones may also be impacted by CF.
Living with CF while experiencing substance misuse can put a lot of strain on your physical and mental wellbeing. It can be difficult to juggle both and can be especially challenging if you do not have enough social support.
Transition to Adult CF Clinic
Navigating your own health as a young adult, handling your care and overseeing your treatment can be overwhelming. Learning how to do so can also be stressful and you may feel like the journey to optimizing your health is lonesome.
Starting, maintaining and even ending relationships is a part of life that can be especially difficult for people living with CF. Whether it is family, friends or other loved ones, your relationships will influence your health. For some people, this responsibility can be difficult to handle.
As a parent, it can be difficult to maintain your health and stay vigilant with your care when you also must care for your children. Living with CF as a parent can be both physically and mentally draining, causing at times stress, frustration and anger.
Work, school, family, friends, hobbies and life in general all come with their own set of responsibilities that you have to balance. CF can heavily impact this balance. Maintaining or changing your life to accommodate CF can be difficult and may force you to reevaluate what you can handle and where you will require support.
The treatments and interventions associated with CF are time-consuming and require a lot of effort and diligence on your part. Keeping up with medication schedules, performing physio routines and attending your appointments can be overwhelming. Staying consistent with your care is important, but this may be a challenge, especially if you are independent or do not have enough social support.
Burden of Care
Living with CF comes with a lot of responsibility that can be difficult for you, your loved ones and social supports to handle. You may experience fear or worry that your care and the support you require is too much, which can influence how you interact with your loved ones.
You may feel anxious and go through experiences of depression throughout your life with CF, which can vary in your different life stages. As a young adult, you may feel hopeless about your care and worry about your future and social relationships. As an adult, you may face uncertainty about your life and question if achieving certain goals is even worth it. You may have social anxieties and fear the experience of meeting new people, wondering if you will be accepted. These feelings and thoughts are completely valid and can be expected.
Patients with CF have a unique relationship with COVID-19, such that you may have a heightened fear of getting sick and worsening your progress with CF.
Adjusting to life with CF can be hard, especially if you are newly diagnosed. It can also be overwhelming if you have begun treatment with modulators and are now experiencing the positive effects of treatment. Adjusting to these types of changes takes a lot of mental strength and may affect your emotional wellness.
Dealing with the loss of a loved one, missing out on certain opportunities, losing financial security, facing health deterioration and losing relationship stability are some challenges where it can be easy to lose yourself in grief and neglect your care.
The thought of ending your life or causing harm to yourself, especially when you are faced with a chronic illness, can be difficult to discuss and may cause feelings of helplessness, avoidance, isolation and fear. Being vulnerable enough to be open about these feelings is hard but necessary to allow yourself to access supportive care, from both loved ones and your healthcare team.
Your caregivers may be experiencing challenges with providing supportive care and maintaining their own responsibilities. It is important that you and your caregivers discuss these challenges and work together to find solutions to address any burden on your mental health and self-efficacy.