“Even with my condition, I accomplish a lot. Sometimes the path is longer, but I always get there!”
Becoming independent and standing on your own feet doesn’t happen automatically. If you have a chronic condition or physical disability, it can be even more challenging to, for example, start studying, live on your own, or find a job. Besides the usual uncertainties, your condition may bring additional questions. Discuss these — it will help you do what you want.
Taking control of your own life means deciding how you want to live. You make choices that suit you best and make you happy. Decisions you cannot make on your own can always be discussed with people you trust.
Self-management means taking responsibility for your life and everything that comes with it, including your treatment. With good self-management, you are able to live the life you want and take charge of your care. It’s about learning to make your own choices and being at the helm. Self-management does not mean you have to do everything alone — others can help, but only if you want or ask for it.
In the past, your parents made all the choices for you. Over time, this gradually decreases until you can manage everything yourself. Self-management applies to many areas, such as the hospital, work, school, and free time. It’s still useful to keep your parents informed occasionally and ask them for advice. Becoming an adult means learning to be independent, step by step. Keep daring to ask questions and don’t be afraid of making mistakes. Your environment is there to help you, and this website is here to guide you as well.
In healthcare, promoting self-management is becoming increasingly important — as a complement to medical care. Self-management in this context means that you and your doctor or nurse work closely together to keep your condition under control, so that your daily life is affected as little as possible.
Focusing on your strengths and possibilities — rather than limitations — helps everyone, especially if you live with a disability or chronic condition. Know yourself, value your abilities, and trust in what you can do. If that’s difficult, seek support from others.
Understanding who you are is a key requirement for taking control of your life. One way to quickly gain insight into your personality is by taking a personality test. These tests often explore your thoughts about work, friendships, and relationships.
Everyone is unique, and this is especially true if you have a condition. Many factors can influence how you manage your condition and take control of your life. How you handle different situations, or the way you behave in them, depends largely on your personality.
Do you worry about your health quickly?
Do you take responsibility yourself, or let your parents handle things?
Do you push boundaries, or prefer to take it easy?
There is no right or wrong way, but some approaches work better in certain situations than others. Especially during puberty, your own sense of self — your identity — develops strongly.
The ultimate goal of self-management is to handle all the necessary tasks, such as scheduling and attending hospital appointments. Being actively involved in your treatment is important for your care.
Healthcare providers often observe that young people may lose independence due to their condition, which can have negative effects on their treatment. Self-management provides a positive counterbalance.
By being more involved in your own treatment, you gain a better understanding of what the treatment involves and more clarity about the process. This way, you know what to expect and can plan and manage your life around it more effectively.
In everyday life, more and more is expected of you to become independent. This includes paying attention to your bedtime, making sure you eat enough, and thinking about your health. You have now been given (and during puberty, partly claimed) the freedom from your parents to arrange some things—or even everything—yourself. In this process, it is especially important to keep your well-being as your highest priority. It is about searching for your own lifestyle and learning a lot along the way, including by making mistakes.
To become independent, you need to gain a lot of experience, sometimes with the help of people around you. For example, there are your parents, from whom you can learn a lot and who are usually happy to help you. Doctors can also provide information and inform you. In addition, other organizations can help you become and remain independent, such as patient organizations or support services within healthcare.
Patient organizations, such as our organization, focus among other things on self-management in order to contribute to a better quality of life for people with a condition. For years, patient organizations have advocated for a greater role for the patient in the treatment process. There is increasing attention to what you, as a patient, can do yourself when it comes to lifestyle adjustments and adherence to therapy. Patient organizations have developed initiatives to help you make an active contribution to your own health. This includes providing education about the condition, offering “patient versions” of medical guidelines, and establishing networks of sports or exercise groups.