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TOPIC: Explaining your illness to your family

Explaining your illness to your family 6 years 7 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 5 years 2 months 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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Explaining your illness to your family 5 years 1 month ago #3

  • Maff
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Great post Poliq and thanks for sharing your experiences. I tend to take the same approach as you with ME/CFS, depression and everything else that comes along with both. I hate confrontation so I never lash out at all, rather keep it bottled up and try to find some alone time. When this isn't possible I'll just go into "silent running" and keep my thoughts to myself. This seems to be a natural reaction as much as a conscious choice. It's just the way I cope with things and recharge as much as possible. I can go for a whole day without talking to my wife while being in the same house together.

Obviously the above is not constructive and I know I should be more open and discuss things but I get to the point where there's just nothing in the tank and I can't even muster the energy to think, never mind talk.

I've always been interested in psychology and self-improvement and last year stumbled across the Myers-Briggs Type Indicator (MBTI) based on the work of Carl Jung. I discovered I was an INFJ type which is incredibly rare - approx 0.7% of the population overall and 0.4% in men - which explained a lot. A "problem" with being an INFJ is that we always feel misunderstood, so even when we do open up we more often than not come away feeling no better for it (and usually worse) as we couldn't get our complex inner thoughts and emotions across. INFJs are "blessed" with both a high intellect and also a very sensitive emotional side which causes huge inner conflict and can be incredibly draining. I'm now looking very closely at this and trying to make changes in my life that allow for my psychological peculiarities. The unfortunate reality however though is that I'm never likely to feel fully understood by anyone other than other INFJs (hard to find!) and other similar types e.g. INTPs.

I'm planning to start a sister site / community to EiR (EiR Psychology) to explore this and other topics in much more detail. There will be many environmental and invisible illness patients who scoff at psychology but it plays an important part in everybody's life and in particular when you have a chronic illness of any kind. You can't be physically healthy without being mentally and emotionally healthy - fact! The mind-body science is unequivocal on this. The longer a physical illness goes on the more psychology is likely to come into play.

Look out for the new site when I can muster the energy to get it up and running if you're interested!
If you are going through hell, keep going - Winston Churchill
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