When Should I Start Caring?

NOTE: This post was actually written about 7 months ago, when I was in the middle of getting tested for a number of conditions. I was hurt and afraid. Its tone will therefore be considerably different than what you’re used to, if you’re a frequent reader. I decided to publish this because I felt it a fair question, one that could elicit discussion and would elicit thought.

I belong to more than a few email groups. Usually, these are for subjects I wish to learn on: psychology, health, writing, philosophy, etc. Recently I joined a particular health group because I wanted to find out more about a particular condition, one that isn’t well studied but which is being revealed as being more prominent than people once thought. I did this in order to learn, and to help others. However, the old adage “No good deed goes unpunished” proved true, as it was my helping others that cost me my ability to learn more about it. I’ll explain:

For months, I had been part of this group. I spent my time in the shadows, reading messages and learning, since there wasn’t anything I could really jump in and teach or help. Frankly, it was a bit of a relief, since I’m used to being the person who steps in and is instantly a factor in the conversation. Don’t ask me why that is, it just is. Probably because I make it a point to learn by teaching.

As I read, I learned. A lot. More than I could have ever learned by reading some web page (and I read a lot of them). More than I could have ever learned by listening to a lecture. More than I could have learned by asking a doctor during a visit. I learned about the personal struggles of some, their victories, and their frustrations. Their world became real to me, not because of knowledge, but because of emotion. I finally understood their pain, and I knew that, at least as far as I was concerned, they weren’t alone. Turns out many people with this condition are, and they’re afraid because they don’t know what life now holds in store for them.

Yet, I never pitied them. Never. I empathized, I felt for them, and I prayed. In fact, with the knowledge I’d gained in this group, I started helping others in different forums, helping them see that their diagnosis wasn’t the end of the world, just the beginning of a challenge, that there was still good to come. And it felt good when someone would come back and tell me “Listen, your information was spot on, and I’m now on the path to feeling better because I followed your advice.”

That’s a really, really good feeling. Times like these make me wonder whether perhaps I should indeed go into the medical profession. I’ve certainly considered it more than once.

A few months after I joined, a message came up in the group: one of its members was having a problem with her daughter. The girl had gone off her ADHD medications and was engaging in self-destructive behavior, causing her mom to worry and the condition to worsen.

Now it was my time to give back to the group, even though it was off-topic.

I wrote her mom in order to talk to her about Dabrowski’s theory of positive disintegration. Based on what she had described, it seemed her daughter was at Level II, spontaneous disintegration, espressed in her case by both prurient behavior (possibly due to sensual and emotional overexcitability) and self-destructive tendencies (drugs, alcohol, and very likely suicidal thoughts; possibly psychomotor and intellectual overexcitabilities). Many of these overexcitabilities often cause people to be labled as ADD or ADHD, and stuck on medication to suppress these symptoms, when in actuality it’s just the mind screaming for proper stimuli. I explained in my letter that her daughter would do well to be evaluated by someone familiar with TPD, and bore my soul as I told her, in very detailed terms, of my own experiences.

The email never made it through the filters.

Don’t get me wrong, the reason was very valid: the email was not within the scope of the group’s intent. No problem, totally understood. It was the next part of the letter that floored me.

See, it was with this letter than I introduced myself to the group. I told them that while I was not diagnosed with the particular condition, I had stuck around in order to learn. I thanked them for the knowledge given me, since I’d been able to help others with what I learned. The response I received from the moderator was essentially this: You don’t have the condition, therefore you shouldn’t be in this group. If you want to learn more and raise awareness, here’s a website.

Turns out I had seen that website before, and read it in about six minutes. It gave me a great intellectual overview of the condition, but it was devoid of all emotion, the root of all desire to learn. Then I was kicked out of the group.

I couldn’t help wondering about this, couldn’t help questioning when I should start caring. Seriously, when is it OK for me to get into learning about issues on the personal level instead of the intellectual? Should I be as selfish as most people generally are (including myself) and be concerned only with conditions which affect me directly? Too often, wealthy folks and Hollywood elites are lampooned for caring about causes only after something affects them: autism, AIDS, cancer, multiple sclerosis… They’re called selfish and self-serving because they didn’t put their face out for that or some other issue when they were healthy. Yet, when someone genuinely goes out of their way to get to the personal level with an issue, trying to not just learn about the issue, but also to care enough to be stirred to action, should they be shunned?

This morning I was watching the news, and a commercial came up about a walk to raise money for research into the causes of premature births. The organizer? A local news anchor whose twins were born four months early. How would she be perceived if she gave more than a passing rip had her babies been born at 9 months? Would she be seen as someone who truly cared, or seen just as another celebrity looking for a cause in order to get more of the spotlight?

Don’t get me wrong, I understand that some may fear that their suffering is being exploited for someone’s sick form of entertainment. You’re going through something completely life changing, possibly life threatening. You don’t want someone there gawking, offering nothing more than their pity, or even worse offering bad advice which makes you feel weak or like if this is somehow your fault. But do you prevent that by shunning both the good and the bad, those who would gawk as well as those who could potentially help?

I realize the answer to this is very personal, and I don’t expect there to be a universal response one way or another. Still, I can’t help wonder: if you want people to really get emotionally involved in your cause, why wouldn’t you let them see the human side of things? Do the benefits of secrecy outweigh the risks? Consider also whether you really expect people to be inspired to action by a pamphlet’s worth of information on a condition that’s little understood.

So here I am, left wondering. I still help those I can with the information I gained, but the loss of that resource was cataclysmic; sadly, I now find myself being less able to help those who come for help regarding that particular condition, not the least of reasons being because I no longer have a teacher, and frankly, I don’t have the time to do a ton of my own research. Maybe the onus is on me to go out and read up on this. (To a certain extent, I thought I had.) I haven’t seen any local support groups, so that’s out of the question. And if I’m left to be a one-man army on this, without getting any sort of personal experience, would my help do more harm than good? That strikes at the heart of my fear.

For now, all I can do is pray. Maybe I can start something, start an organization or a web group, but given I don’t have the condition, would anyone really take me seriously? Probably not, and for good reason. It reminds me of a story wherein a pig and a chicken are standing on the side of the road and see a billboard which reads “Bacon and Eggs: America’s Breakfast.” The chicken says, “Wow, isn’t it inspiring to be a part of that.” The pig responds, “Sure, it’s easy for you to say. For you it’s merely dedication. For me it’s total commitment.” The selfish passion of someone who’s in the trenches, battling the monsters themselves will always be greater than that of someone whose only passions spawn from a non-selfish desire to help. One person’s fighting for their life while another is fighting for what the perceive to be a good cause.

For now I’m only truly welcome to learn if I’m committed, instead of just dedicated, which leaves me wondering when I should start caring.

3 thoughts on “When Should I Start Caring?

  1. You know very well my encounters with someone with the exact same adhd symptoms in that same stage which started pretty much a year ago.

    Honestly after reading the article I was rather suprised. One on how different both the tone and context of your writing from a year + ago, and two, the surprise of being kicked out of the site. Such a site would be full of emotion and intense feelings of brotherhood of people as they bare their intimate thoughts about conditions where they have minimal control. To find out that one of the people reading your exposed musings was someone who was dishonest about having the condition or their intension from the start, well that is a severe break of trust in an emotional setting. Id be very angry. People want the world to care about them and their problems, but only a select circle to know their struggles. If it was for the world to benefit from the depth of their emotion or, they’d write a book.

    Here is what I can say from my experience. Trying to help someone with a condition without having some direct (loose or close) connection to it is tantamount to telling your pregnant wife “I know how you feel”.

    While your intentions were pure, to provide comfort, the end result is you get pummeled half to death in both cases. Bottom line, do you stop caring about your wife and her pregnancy?

  2. Actually, I wasn’t dishonest about the condition: it was under consideration and testing was underway, which is WHY I joined the group (I thought this to be the most likely culprit). At the point of this conversation I still hadn’t been diagnosed, so I couldn’t say “I have the condition.” I introduced myself as “I haven’t been diagnosed with it.” Never once was I dishonest. And, oh yeah, a few months after this happened I *was* diagnosed with the condition. (I was told not to worry about it at first, then that yes, I indeed had this). In fact, I just came from a doctor’s visit where my meds were upgraded from the common to the “You can’t get that in the US, here’s the number of a Canadian pharmacy.” Happy new year, eh?

    I was in the email group to learn. I never once jumped in on conversations about the particular condition because it wasn’t right for me to do so. I only jumped in with something I knew about, presented in a way that said “I here’s some information that I’ve found helpful.” That’s the first issue.

    As for the second issue, why I was in the group: What these people were going through was something I couldn’t understand. I could get close, having experienced some of it first hand, but some of these people were in and out of the hospital on a regular basis; I’d only had to be there a few times, and for very minor issues (relating to the condition and testing.) I wasn’t pretending anything.

    And it’s funny you mention the being pregnant and “I know how you feel”. When my gastroparesis kicks up and my stomach starts twitching it feels like a baby kicking inside my stomach. (That description has been given to me over and over again by ladies who were pregnant and have gastroparesis.) So in a very limited sense, I sort of know how THAT feels now. Kinda weird.

    But let’s take a closer look at your “wife and her pregnancy” example: that’s the wrong question, because I’m still personally involved. How about being interested in pregnancies in general. (Or better yet cancer, since it is a medical condition outside the norm, but still well known enough to elicit emoptional response.) Many of these same questions could be asked, and the answers would hold a similar range, with the unspoken question being “how close am I allowed to get without becoming offensive, distracting or destructive?” Being one that believes that knowledge can be power, and knowing full well that the power is a two-edged sword, that question becomes a particularly complicated one.

    For the record, this post was actually written about 7 months ago, when I was in the middle of getting tested for all kinds of conditions (and before I knew about your situation). I just finally decided to publish it because I felt it a fair question, one that would elicit discussion. At the time I was very, very hurt because of this, which was amplified by my own fears, since I didn’t know what was going on with me. Now, your comment points very well at the other side of the coin, which is “do I want other people who don’t have the condition to know what I have to go through, knowing that some will think they understand when they really don’t?” And it’s a hard, very individual question. I don’t fault the group mods for answering in a protectionist way. But it does raise the question as to when is it OK to begin being involved–even if it’s just as support–for something which touches you emotionally though not personally in a non-celebrity cause. (Celeb causes: “cancer” and “AIDS”. Non celeb: “turrets” and demyelinating diseases that are not “Multiple Sclerosis”)

    To alleviate any fears: have I stopped caring? No, I haven’t. Take a look at the number of posts. That represents about 200+ people I’ve answered questions for, not including side conversations with far more detail. Have I helped every one? No. But when someone you don’t know tells you “thank you, the information you gave me was spot on”–a thanks I never expected to get–it’s a pretty good feeling. Note that I really only ever talk about things that I’ve been through and know enough about. Otherwise I just ask questions, and do a lot of reading/listening. This is one of the things I do because it comes naturally to me, to share what I’ve learned with people looking for the knowledge. Sometimes it’s just about learning who’s really looking for the knowledge.

    By the way, Happy new year.

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