Personal insights

So I constantly am thinking about the social dynamics of having an invisible illness, one that requires others to listen to your symptoms as they are not clearly visible.

I have two brothers that are close in age. I have had this problem affecting my body for over a year now. Today I was thinking about it and realized that not a single time have either brother said anything sympathetic towards my condition. I rarely complain about symptoms, but when I do the only response I have ever gotten is simple solution responses.

Example - I used to LOVE exercising. My brother comes to my house to get clothes to exercise in during his lunch break. He asks me at least 20 times now "why don't you come and work out with me?". I say "because it will cause a crash, man this sucks I wish I could work out again I miss it so bad" His response [incredulous look, rolls eyes] "just start working out slowly man" [shoots glance as if to say, quit complaining].

Example - I got really bad brain fog one day, I could barely play a pool game with my brother. I said it might have been some gluten I ate. He all of a sudden became filled with rage and said "quit acting like you know more than a doctor, go get tested for celiac, and if you don't have celiac then you can eat gluten". As if there isn't tons of anecdotal evidence that gluten can cause symptoms in pretty much anyone, not to mention the complete denial that I may have complicating factors due to actually having a legitimate immune system disabling condition? Not to mention that his reaction to me being obviously fatigued and feeling like shit is to get angry at me? He then added "People who just claim to be gluten intolerant ARE THE WORST, soooo ANNOYING" At that moment it dawned on me that my brother ridicules and makes fun of people (in bad taste, sometimes its justified to make fun of situations) most likely to make himself feel good. I know so because I used to do the same but try to no longer do so.

Example 3 - I am lying on the couch in a brain fog watching tv during a bad crash. I am about 8 months into this illness. My brother comes over and says "hey man come on and come to the bar with me, we are going to have a lot of fun and there will be lots of girls there". I say " I am having a bad crash, I feel terrible, I need rest, I really wish I could go have fun and drink and meet women". His response, "hmmm." [stares at the ground for a few seconds... leaves the room, doesn't bring subject back up].

Not once has any of my brothers said "I am so sorry man I really hope we can find a way for you to get better" or "Tell me everything so I can help you figure this out". I asked for their help when this all started, and they got angry and told me to see a psychologist and work out my "issues" and if I don't do that then everything is my fault for not getting better.


When it comes down to it, there is no solution for people other than to have someone with authority legitimize our disease. Without the medical community claiming so, they will never listen. I actually have a hypothesis for this.

I believe people we know don't listen to us and only listen to authority because they can't deal with stress. It is their psychological protection mechanism being initiated to deny anything that may be stressful as long as there can be any possible logic to arrive by that our situation is not anything other than psychological.

Just think about it. People who are close to us, that deny our symptoms, are they quicker to anger than most? Do they defer to authority quicker than most? Do they lack individualistic traits and tend to like to fit in? I feel as if all these traits tend to fit someone who has problems dealing with stress. These people tend to make the world a very small and simple place in their mind to protect themselves from stress. Our health situation threatens this naive and logical place that helps this person get by and enjoy their life with as little stress as possible.

What other traits can you point to in people who like to deny our symptoms as nothing more than us needing to "be more mentally strong"? Tweet