Having More Good Days Then Bad When Chronically Ill

The events in the past 3 years have resulted in a significant up tick in those coping with chronic illness, especially those living with long COVID. When we first learn we have a chronic illness which has no cure, that’s devastating, and we need to take time to grieve. Once we are done grieving, we need to get back to living, and for most of us that means work, family, and social obligations need to be met. But how do we do that? It starts with an overall assessment of our ability to be active and leave the house. Understanding how often we can go out allows us to set realistic expectations for ourselves and the people around us. Once we know how frequently we go out without causing further harm or completely depleting our energy stores, work should be our first priority. I know our instinct may be to put family first, but if our money isn’t right, it’s really hard for everything else to be right.

Finding work that allows us to manage our condition begins with being honest about what our condition is. Start with how many days can you go out and how many hours you can focus. Can you still go out 5 days a week and focus 8 hours a day? If not, look for a hybrid job that is part remote and part in person. Due to the global shut down, there is a surge in hybrid jobs, and major job posting sites such as Indeed,Glassdoor, and Flexjobs are a great place to start. Work is the primary activity for most folks, and finding a job that allows you to have enough energy reserves to meet your other commitments and pursue the things that give you joy is especially important when coping with chronic illness. Everything changes and slows down when we have a chronic illness, but we need to have joy and that takes a little planning.

One of the biggest adjustments of being chronically ill is that you must become really good at planning. I advise parents who are chronically ill to under promise to children to limit their disappointment on bad days. This way you can get hero points when you over deliver. I advise the same approach for friends and family. If people are not expecting you to go out, and you have a surplus of energy, having a plan B that allows you to pleasantly surprise friends and family will help reduce feeling like a weight or a constant disappointment. This means that you have to do a lot of self-discovery. Test your limits and then set expectations that you keep private to see what your boundaries are. Once you know yourself and your new boundaries, you can then plan for days when you feel energetic and good with levels and natural stopping points if you have a sudden energy drain. This will help you understand yourself and have a life with more good days than bad.