I live with a condition that makes most things difficult for me. Imagine if you were rarely able to direct yourself towards any one task or accomplishment for long enough to succeed. Imagine living with the constant guilt and frustration of knowing that. The frustration of never moving forward with your life and doing what you really want to do. Everyday activities become more difficult. It takes me longer to do basic things than it does for a lot of people. It’s constantly a struggle. Some days I just want to give in. Let go. Relax. But I can’t. Almost everything is a struggle, when your memory disappears randomly, or is just never there, or the least little thing will put you off track, and then you don’t remember what track you were on to begin with. You dream, you plan, of so many things, knowing they will mostly remain only that. You feel sad about that. You feel sad and guilty about disappointing everyone around you. My condition is still relatively unknown, often heard of but just as often misunderstood. I’m “lazy”. I “don’t listen”. I just need to “communicate more”.
A person at a CLSC (local healthcare clinic) was baffled that I managed to get my diagnosis, saying it’s nearly impossible in my city. A lot of medical professionals either don’t believe it exists, don’t believe people of my age group have it, or are apathetic, uninformed and dismissive about it. People with my condition are misdiagnosed a lot of the time, living for years struggling to find a solution with treatments that don’t help. Doctors who are knowledgeable about it and can treat it properly are few and far between.
The search for a treatment, even with knowledgeable doctors, is hit or miss, trial and error. It often lasts weeks, months or even years. Even once proper treatment is found, the symptoms never go away completely. Beginning to search for treatment can be fraught with wrong turns and misdirections, some of them expensive. Often very frustrating. It takes weeks or months before you finally get an answer, a diagnosis. People are often pushed to seek treatment because bad situations caused by this condition force them to question themselves, to ask themselves “what is wrong with me?”.
You wonder “How different would my life have been had I known sooner? How much of my life is really influenced by me rather than my condition? Who would I be without it?
You try and laugh it off, or make excuses, knowing inside that it will most likely be useless at best, damaging at worst, to try to explain why when things go wrong because of it. Often even close family and friends, spouses, parents, (well-meaning or not) refuse to acknowledge it, or brush it off, or tell you to get your act together, or react in any number of unhelpful or harmful ways. Thankfully this is not my case. But there are so many for who it is.
You live day in and day out with all this knowing that this is one of many very misunderstood and maligned conditions. But trying to talk about it doesn’t always help. I choose to try anyways, sometimes.
5% of the population in North America has it, but it is estimated that 50-75% of the people who have it go undiagnosed.
You sometimes fear the medications themselves. What will they do to me (the fun part, everyone reacts differently, oh joy! Will it be palpitations and chest pains, or inability to sleep, or anxiety, or the jackpot: addiction? )? To what extent should I put up with side effects while hoping for some benefits before giving up and trying the next one? Am I stuck taking them forever? How many do I have to try before I find the right one? Will I ever find one that works? Even the pharmacists themselves sometimes judge you for the medications you buy from them. Fortunately meds are not the only treatment.
You fantasize about a world where everyone would truly understand what it’s like, where all medical professionals are knowledgeable of it, where society as a whole has adapted to it and accepts it and treats everyone who has it with understanding, compassion and love.
People lose friends and other relationships because of it. People lose jobs because of it. I did. I fear telling future employers about this, or anyone really. No, I don’t have aids, or cancer, or some rare genetic disorder. I have ADHD.
Disclaimer: This is just me trying to convey what it’s like for me, my experience. Others with it may differ in their views and opinions about it. I just wanted to express what things are like in regards to this for ME, not someone else. I can’t, and won’t try to, speak for the entirety of the population who has this.