Chronic illness has secrets. These secrets often don’t get aired by the daylight. Most people with a chronic illness or rare disease struggle with daily life. Those struggles are usually hidden from the world. Popular psychology says that a positive attitude helps matters. It is true, being optimistic does help many things. Let us be honest though. The British bull dog spirit often falls way short of helping those with chronic illness cope their new imposed reality. At times the maxim can be simply patronising.
The secrets of chronic or rare disease
1. People with chronic illness are always trying to adjust to uncertainty about or change in their physical state. The sword of Damocles that hangs with an unknown prognosis causes anxiety. Individuals are often unable to talk about these fears. They are scared of being labelled moaners or hypochondriacs.
2. Sufferers of chronic illness feel very alone. This is also true in rare disease. The medical profession frequently does not understand their condition because it is so rare. The lack of knowledge by professionals about a rare disease usually results in the person researching all they can about their illness. This is not a fixation but an attempt to maintain some control, a control that may even save their life. An awareness that there is a likelihood that you will have to advocate for yourself when vulnerable during a crisis in order to get correct treatment is scary.
3. People with chronic illness often try to micro manage life. These real fears about a health emergency can make the person stop doing normal things. This attempt to reduce the possibility of crisis can lead to further shrinking of life and a growing feeling of personal isolation.
4. Sufferers know that there is absolutely no certainty that the task or activity they did easily today will be able to be repeated tomorrow. The body is in charge and it can be mean abuser of the spirit.
5. People with chronic illness often feel angry, guilty or sad. This is because their hopeful plans made weeks in advance may need to be cancelled at the last moment because of a surge in symptoms. This weakens the individual’s support network further as ‘friends’ often don’t get it. Unwell people begin to be seen as unreliable rather than ill.
6. They may not get the support they need because they look good on the outside when there is an invisible but major inferno going on inside.
If you are battling a chronic illness or rare disease. It’s a pretty smart idea to give yourself a gentle pat on the back. Remember you are not alone, that you are a fighter. Lastly, know that there are many others there in solidarity with you.
