My parents wanted me to come and visit and spend more time with them in San Francisco, which was an hour and a half ride by public transit (I don’t drive) each way, plus whatever time I spent with them. I often begged off due to fatigue, or due to pneumonia-like symptoms. See, I say “I feel like I have pneumonia,” which means that I feel many of the same symptoms of having pneumonia without having been to the doctor to get diagnosed. Having had as many cases as I’ve had, I can usually tell when it’s severe enough to warrant seeing the doctor, especially considering that seeing the doctor meant I had to work a half-day instead of a full day.

One time, when I was over at my parents’, they had left their email open. I made the mistake of reading it, and they declared that they believed me a hypochondriac in it. This was before my diagnosis of fibro, but while I was definitely expressing symptoms of it. Unfortunately, many of those symptoms resembled my mom’s, and she has MS. So they perceived me as wanting attention by pretending to express the same symptoms she had. This was not the case.

The world believes that what’s wrong with me is all in my head. My physician, blessedly, is not one of them. But even my first application for SSI included the words “it’s all in his head.” I even had a doctor in the ER tell me that I “had a lot of fake problems.”

I’m here to tell you an important message. It actually is all in my head, in that fibro is overactive nerves that are messing you up for no good reason. There’s no way to see it. There’s no way to prove it. But that doesn’t, in ANY WAY, make it any less real or valid. I am still in pain. I still have fatigue, and lose my apetite, and have hot spots where it is agony to be touched. I still find it exhausting to spend time around people, or loud noises, or a lot of strong smells. I still have the taste of food altered by my illness, and have floaters in my vision that sometimes render me unable to see much of anything, and get fairly awful tinnitus periodically, and sometimes I sleep for days at a time basically, getting up to eat and go to the bathroom and nothing else. I still forget words and use the wrong words for common concepts.

My illness is real. It is invisible. But it is real. And it doesn’t matter what other people think of it, whether other people believe me or not. It’s real. Medicines designed to treat these illnesses work and help to alleviate my symptoms. Medicines designed to treat some of the symptoms (like pain medicine, which has a history of not being effective for most fibro-related pain, and is only for breakthrough pain) are not effective, as expected. Altering my diet some, attempting to do more stretching and exercises that are shown to be effective help alleviate my symptoms. My illness is real.

I never told my parents that I read that they called me a hypochondriac. It wouldn’t be helpful and would just lead to us fighting about it. But I can, in all honesty, safely say that my illness is real.

It’s a tough fight to go through, having an invisible illness and facing a world that doesn’t believe in it. I am not the kind of person for whom support groups are effective. I use mantras to remind myself that I have this illness, but that it does not define me. That my limitations are real, but that I can continue to live a fulfilling life nonetheless. I remind myself that the opinions of others do not define me either, and that it doesn’t matter what anyone else says, my illness /is real/. Never let someone else tell you what you’re experiencing when it comes to this sort of thing. It’s hard, but you have to stick to your guns and know that it’s your life, your experience, and it’s real.

And anyone who tries to deny it? Examine whether they are necessary in your life or not. Give them a good, hard look. Because chances are? They aren’t. And you will be much better off without them.

Always remember: Just because it’s in your head doesn’t make it fake or untrue. It is real.

First there is considerable research on the topic and anyone who has delved into said research may be wondering if the term ADHD is a catch all term used for a whole spectrum of closely related conditions and the brain imaging studies have found some interesting things. For the sake of discussion let us assume that ADHD is a somewhat understood thing that is still under study, which is all fine and dandy but how does that help us in the here and now?

Two Major Issues of ADHD

Now I’m going to be talking from the perspective of someone with ADHD (currently unmedicated, you are welcome and I’m sorry) and the first major problem with ADHD is first the person who has it is not the real sufferer of the condition. (Ask Coyote in Zebra Clothing about that sometime)

We will take today for instance, I decided to take the car real quick to get rent money. While I’m proud of myself for staying on task for an event that took more than two physical steps of my feet…I neglected to recall that I have almost no perception of time and ended up making my brother late because it didn’t dawn on me that things like morning rush hour might produce things such as traffic jams and police stops that ended up leaving me stuck in my parking space for many more minutes than planned because some random person decided to park and block me in while getting their ticket, or that the clerk checking me out because I decided to get a sandwich and coffee might have decided to see how big of a line they could make before someone came to help them. So…. I’m making spaghetti to say sorry, **apology gestures are a thing, Do The Thing**.

The second major problem is it is doing life on a cognitive expert mode. Imagine playing a game where you decide to use only the sub-optimal strategies where you took points out of things such as judgement, impulse and emotional control, long term and working memory…and decided to add them to the “hold my beer” skill. While that sounds like a fun Mod of the Sims to play and an interesting person to have at a party, I’m not sure I would want to be that person…..oh wait….I am that person. Introspective self deprecating gallows humor is good at articulating your issues, **self deprecating humor is a thing,Do The Thing**.

Acknowledging Focus & Distractions Hurdles

Now to get on topic, As I’ve just demonstrated the mind of those poor people with ADHD is filled to the brim with distractions. It is not to say that we can’t focus, I give everything I see 1000% focus…until there is something else to see. And even if I manage to find a place where there are no other physical distractions it is entirely possible that some mental distraction will come along and I might just sit there for three hours while I work on a story for some random subreddit to post or brainstorm some random social experiment. But this is where the making the most out of sub-optimal strategies part comes in.

Thankfully for me I learned early on that this way the way I was. I think that was the 2nd grade while I was standing in the corner with my arms spread and my fingers on each of the discipline marks on the wall. I’m not sure what the full list of things I did to get me there was, but failure to do school work and some highly unfiltered words from my mouth may have had something to do with it. It dawned to me that maybe there was a mechanic I could use to mitigate the attention drift problems I have and I began to read ahead. Now I’m not going to say there was not challenges, but I discovered that I could ‘write’ papers in my head in those moments of drift and occasionally I could recycle that material that mattered. This was a huge successes for me or for most people it would be just a success but work with what you got!

Productive First Steps

I learned that the key to getting things done was inner and external environmental control, this way even if I got distracted I still did something that needed done….a very useful thing. Now as a child my focus room was the little bathroom at 2 am when everyone was asleep and while this was by far a less than ideal strategy, it still got things done for me. There was no TV sounds, no distractions from parents or siblings and a deadline.

Next was mastering preemptive damage control. Keep in mind the tune of the day is making the most out of the sub-optimal strategy available to me. Each assignment I would plan out the moment I got it. If I could give it a credible attempt at finishing it in 5 minutes, than it was done in the next class in the first few minutes. Classes that generated assignments that could take an hour or more were broken down into chunks and I would squeeze them in (when I remembered) a few at a time in lunch, on the bus, in the start or stops of other classes, anywhere but home.

Putting It All Together

So, thus far this seems fairly simple. Find your quiet time to do your thing, keep your potential distractions to be something synergistic to some main project or whatever. Now it is time to discuss an external means of distraction that can be problematic.

That aspect came up in a Learning Disabled program and while it was a good way to be introduced to quite the spectrum of personality enhancements, I think the two major things I learned from it was to pick yourself up off of the ground when you fail, and fails are going to happen. Anyone with ADHD is going to have those moments, it is just like a diet, yeah you are going to have your lapses, just don’t define your life with them.

And the second thing is to own it. Traffic did not make me late, I was late the moment I went out the door. Yes I get distracted but the moment I blame it on the outside world is the moment I am at the mercy of the outside world. So if the choice is to be the world’s pawn or be my own faulty self well…I’ll take the latter. With accountability comes power.