When your doctor tells you that you are suffering from a chronic disease, your entire life changes, everything changes. Kathy Charmaz gives a good overview about the thoughts and feelings those patients have.
Having watched the video interviews one thing becomes very clear: they all went through similar stages after having been confronted with the news of their disease. At first they were angry, at themselves, at others, or just in general. Then they would start to think about their disease and try to educate themselves. After all life would go on, “worse things happen” as one woman put it.
Often the real challenges come with time. When people get sicker and cannot work anymore or have to give up all their hobbies, social isolation is often one of the most devastating consequences. Some people manage to find new hobbies or get involved in self-help groups; the extent of one’s illness is, however, the limiting factor.
Another issue is home care. When people lose control over their bowel movements and need to be cleaned by someone else, they lose not only their autonomy but also part of their self-esteem.
There are a lot of other issues patients, their families and physicians face in such situations. It is always important to think about the challenges ahead and try to adept to your new life as good as possible, after all everything changes.
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"Tuesdays with Morrie" by Mitch Albom is a lovely book about the relationship between a professor who is suffering from ALS and his former student, and how the disease changes not only a life but also one's views of it.
