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TOPIC: Explaining your illness to your family

Explaining your illness to your family 1 year 5 months ago #1

  • Morgan
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Hello everyone,

A difficulty I know many of you face is explaining your illness to your family. Have any of you found a successful way of going about it? I have severe digestive system problems which progressed into mild/moderate MCS with some things, and severe MCS with others. For the past five years this has made it impossible for me to live a "normal life." After several years my family realized that I do have underlying medical issues, but still believe that my problems come largely from mental illness and an eating disorder.
This is complicated by the fact that I am still more or less at the point in my life where I am just starting off and ever since my health has taken a steep decline recently my parents have been helping me substantially financially (including helping me afford my doctor). They are so worried about how sick I am and in their minds would do anything to help me, but the true cause is such a foreign idea to them that they relate my actions most with OCD. They placate most of my needs/avoidances but I know if it ever came down to it and my state declined enough that they were responsible for my care, in an attempt to help me they would put me in an eating disorder facility, which terrifies me.

It is difficult to explain something like this to someone who doesn't have any prior concept of anything like it. Have any of you found a good way to truly convey the reality of your illness to your family?
All responses and experiences are much appreciated.
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Explaining your illness to your family 1 week 6 days ago #2

  • poliq
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I normally don't talk about them unless I am in a situation where it would be vital, in case something happened to me due to my condition.

I have a rare genetic disorder called congenital hyperinsulinism. It is mild, so it doesn't normally affect me unless I am in the heat without a sports drink or something of that nature. This disorder makes me overproduce insulin, so I need more electrolytes in my system. There are few days where I feel light headed because I didn't get enough sugar in my system. Water will not suffice if I am in the heat. I am more likely than my peers to suffer from heat stroke due to salt depletion. I have counted 5 times where I had heat exhaustion due to salt depletion.

I am also a depression and PTSD sufferer. My moods are sometimes very volatile and there are times where I may say things I never honestly meant. I sometimes chase people away with how emotional I can be at some points. Most of this is stemming from an inferiority complex. I often do my best to stay away from people when I am feeling my more destructive emotions are out. Or stop texting and give me my alone time. I don't like lashing out at someone regardless if it were intentional or not. I hate causing arguments too and simply don't want to scare people away. So I often inform them of my conditions when I first hang out with them so they will know to give me some space if it happens.
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