Just realizing adult child has chronic illness

Parent Cafe
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Good luck to everyone. My wife was hit with her chronic illness starting at the age of 22. It has been a very long battle but because she has such a positive spirit she has had a fulfilling life. It took many years to get an actual diagnosis and I think that is one of the most frustrating things she had to deal with. That and the side effects from medicines. That creates a Catch 22 because you need them to live but they cause real problems down the line.

My wife finally was diagnosed with Mixed Connective Tissue Disease- an immune system disease or a catch all phrase meaning that her immune system does not work properly. I just tell most people she has Lupus since they know that word.

She lives with pain and fatigue. She describes it as feeling like you have the flu everyday.

From my experience with her I would tell you fire the doctors that do not give you the respect and care that you deserve. There are great doctors out there take the time to find them. That includes how they run their office and staff.

Do not let guilt play a role in your life. The illness is not your fault if family or friends do not understand why you cannot be as free wheeling or available as they are. No one can really understand what it feels like to deal with a chronic illness except someone who has one. And they really only understand theirs since no illness is exactly the same. You decide what is important for you.

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@MommaJ – Many diseases lead to chronic infections, one after another. As an example, in some immune deficiency diseases, people don’t have B-cells and thus make no antibodies, and also have T-cells that don’t function properly. The result is going to be infection after infection after infection, often leading to sepsis or other system-wide breakdowns.

Those same people often have all sorts of auto-immune diseases on top of that.

Primary immune deficiencies can be devasting conditions that are often missed. (Think bubble-boy as an extreme example).

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@MommaJ as has already been described, many people with autoimmune diseases and immune deficiencies often have chronic infections on top of extreme fatigue and weakness.

In the case of autoimmune diseases, your immune system is too busy attacking your healthy cells to fight off the infection like it’s supposed to.