You get the overwhelming news from your doctor: You have a chronic disease.
It’s a different animal than other sicknesses. You’ve had colds, the flu, or maybe even bronchitis, but you’ve always recovered in a week or so. But a chronic disease might never go away and it could disrupt your lifestyle.
Chronic illness can affect a person’s life in many ways. Pain and fatigue might be daily visitors. The illness may affect personal appearance or physical abilities and independence. You might not be able to work, causing financial problems. Big side affects of chronic disease can be stress, anxiety and anger. Sometimes the anxiety about the uncertainty in your life can be more stressful than managing the symptoms of the disease.
First of all, as a friend of mine says about the future of a chronic disease: “What we think will happen usually never does.”
The first year of a diagnosis is usually the most challenging. A myriad of feelings may overwhelm you – how will you manage the symptoms, medications, treatments, and will you be able to afford them? The future can look bleak, as a person might paint a very frightening picture of how their disease might play out in the future. Will I be able to work? Can I still travel and do daily living activities like climbing stairs, reading and driving?
There are some practical ways to settle us all down in the first year of our diagnosis.
First of all, as a friend of mine says about the future of a chronic disease: “What we think will happen usually never does.” Those words offer a lot of comfort. We often get worked up thinking that we might not be able to do this or that, or that our illness will only take the worst possible course. We do not know what will happen in the years ahead. We just need to relax.
Sometimes talking to a person who has lived with our chronic disease can help. We find out how they manage their disease, especially the anxiety. When we see a person still employed and living with disease for many, many years, we calm down quite a bit and have hope for a future that is, by all accounts, normal.
Another way to deal with a new diagnosis is to learn as much as we can about our disease. Information is power. With the Internet, a person can find lots of information about their disease. The only caveat is that some web pages might not have accurate or “correct information” about the disease. Pages like the National Institute of Health (NIH), Mayo Clinic Page, Johns Hopkins page or pages sponsored by the chronic disease are usually reliable places to find out information about their specific disease.
Another valuable resource is support groups. If you are interested in talking with another person who has your disease, support groups are often listed in lobbies of hospitals, health clinics and in local newspapers. Look online for forums or chat rooms that can become a virtual support group.
The first year of diagnosis is tough. No matter how many friends, support groups or medical professionals reach out to help a newly diagnosed person, ultimately, that person needs to come to terms with the disease on his or her own. As you find out more about the resources and products available to help you maintain your lifestyle (like my scooter and BraunAbility Entervan!), you realize that life goes on. By taking control of your disease through education, talking to others who live with it, and finding out what works for you in your daily life, your new diagnosis will be manageable.