I'm currently 50 and was diagnosed with ADHD 3 years ago. I also have suffered from intractable chronic pain for about 20 years now.
I've been very fortunate to be on the receiving end of considerable empathy from family members and many friends. People have been steadfastly praying for my family for nearly two decades, and as a believer, that means a great deal to me.
Yet, one of the things I feel I constantly fight is the sense that if they knew about all my bad choices, had a clearer picture of my symptoms (like executive dysfunction), this support would dry up. That they would feel that I had conned them somehow. Yet, when I look back at those choices, so many were rooted in symptoms of ADHD that I didn't even realize at the time. One thing that drives me crazy is the struggle I have in brushing my teeth. Between the intense pain of standing over the sink (my chronic pain is in my back), and the incredible resistance I feel trying to choose to do this fundamental task, I feel so boxed in. And my teeth are in very bad shape because of it. I also have difficulty with dentists due to the excruciating pain I experience just sitting in the dentist's chair, as well as the ADHD hurdle of getting there. There are several areas like this where the combination of my ADHD and chronic pain have taken a terrible toll.
Additionally, I require strong painkillers to suppress the pain to a level that I can sit at my desk at home and work. Unfortunately, after the CDC released it's 2016 guidelines, a number of things took place that saw the majority of chronic pain patients forced down to dosages that didn't work well enough. And many were completely cut off.
I won't get into it now, but there is strong evidence that what is referred to as the "opioid crisis," did not arise from over prescribing, but was a part of a much longer term growing trend of abuse of drugs to deal with people's increasingly difficult lives. America definitely has a drug misuse issue, but it's important to understand that despite how it's been reported, very little arose from doctors prescribing these medications. And what little there was had nothing to do with chronic pain patients. People have died because of the draconian policies instituted. And it's clear these policies have actually caused an increase in overdoses.
In the midst of this, I was force tapered over three and a half years that nearly cost me everything. I still feel like my energy levels haven't recovered, despite the good fortune of finding a new doctor willing to help me at the level I needed. This has greatly exacerbated my ADHD issues because the mental strength/energy to stick to things had been severely depleted, and likely damaged. It's been about three years since I was put back on a regimen sufficient to allow me to work, and it's still incredibly difficult. When combined with the drain of energy I experience just by being in constant pain, I often run into the brick wall of executive dysfunction.
I apologize for the side track, but it has contributed greatly to my current difficulties, so at least wanted to provide some context.
In the end, I am constantly hounded by doubts that if I'd tried a little harder, worked more at making better decisions, I wouldn't be in the general condition I am now. Then I remember how often I tried to push myself, and during one such extended period I actually had a break-down and was completely unable to do anything but lie in bed for months. So the thoughts go round and round.
I'm guessing I'm not alone in these feelings, and I was hoping to hear from any who are working through these things.
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mmcaulay
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Okay, you need to remember ( I kick myself so I to do) that ADHD is classed as a disability.
We all go ADHD is a superpower etc etc. Yes it can be. I bet you even have skills that are strengths because of ADHD. BUT... Because we have a disability, we find some things harder. In fact a lot of things.
Imposter syndrome is real, a lot of us feel it. It is because our disability is hidden. My other half, goes off at me all the time... For getting to put lids on things, being messy, forgetting to do things... Blah blah blah. (some minor bits, I know! But I don't mean to do it, I wish I could do it).
All I am saying is, you are not alone. I hide ADHD a lot, because a lot of people judge it strangely (I think, this then creates our opinion of ourself) but I think, when you explain to your friends what goes on in your mind- they understand!
I have friends fascinated now about how our minds work! many I thought would think im making it up!
The diagnosis has definitely helped in my acceptance of the areas I can see that I just could not make it work. I also do share a fair bit with the folks I know about what I've been learning about ADHD. I've even been informing recruiters as I need accommodations for technical interviews. My symptoms are an absolute disaster in those types of interviews, yet I've had a successful career actually doing the work for 30 years. So it's been quite tricky as I look for work.
Thanks for your encouraging words. Have a great day!
Thank you for your vulnerability in sharing such an honest perspective. I feel exactly the same and have to talk myself down from the ledge; well l don't really succeed at talking myself down, i just let it pass (usually lasts a day or so) and try to remind myself that I just didnt know how to be with the brain I had.... it was impossible to navigate life clearly when there is so much going on in your head. It's like driving a car in 3rd gear for too long, eventually you're going to wear that engine out. I have horrible back ache, so I cannot even begin to imagine YOUR pain Mine is purely tension but ofcourse needing to do something is not good enough reason to actually do it says my adhd brain lol. I am 49. what has been a huge part of my self acceptance is the fact that my partner does not make me feel like a failure, like the rest of the world did.... teachers, family, i was never making the best of oopportunities but only now realised that was all the adhd. Took jobs that i could cope with because too much responsibility would break me, not because i was not capable but because my adhd brain could focus and eventually I would drop a ball, two balls sometimes all the balls!!! So that just develops into insecurity... a vicious cycle so you never really get to reach your full potential. So at 49 I am finally starting to love the real me inside, with all my faults.. my husband calls them quirks and I like that positive spin. But there are still many challenging days when I choose to have a "me day".... sometimes I nap a lot, and I give myself the grace to have off days, sometimes I read or watch series, just do whatever i want guilt free..... it allows me to function better when its my on days. p.s. Stay away from negative people, they suck the energy out of you. xx
Thank you. I highly value transparency and vulnerability, as it can often be the key to help others open up to their own issues. I've sometimes been in the role of counselor in my life, and I've always worked to stay transparent with those I'm working with. It can be risky, but at the same time very rewarding.
I do agree about "me days." I didn't understand them for a long time, but I'm highly aware of them now. I am also learning to be less hard on myself, and I know that will take time.
I work each day to "center" myself to take on the day with less fear and anxiety. I'm grateful for the medical support I receive from my psychiatrist, as the medications have been critical to keeping my GAD and depression to a minimum. I'm also on Vyvanse now, though it seems far less effective than methylphenidate, which is what I first started on 3 years ago. My pharmacy swapped brands on it without informing me, and as most here probably know, the delivery method is key to it working. Which is patented. :\.
Anyway, I try to take each day and sometimes each moment as they come, to not get overwhelmed. And I can say I've come a long way. If I were in the circumstances I'm in right now just two years ago I would be a total basket case.
Thanks again for showing understanding and sharing your own experiences and insights. Have a great day.
Your words are mine.... yes, the transparency is risky but I cannot operate any other way even tho I have tried thinking it is a better way to live, but not for me. I can relate to the counsellor role.... and yes while the transparency in that exchange is risky as you say, the growth is incredibly rewarding. My depression has taught me that I do not have to be happy everyday..... that is just a product of my childhood - the narrative that I must not express my emotions and just chin up and put a smile on my face even tho i feel sad or angry..... i know differenty now. I crashed from burn out 10 months ago (trying to cope with a demanding job but just not having the mental focus to do so), then 8 months ago my best friend passed away. Only now am I starting to feel like my old self even tho i was on AD.... I had to give myself permission to unlearn all the bad perceptions I had about myself. That I was lazy or too self absorbed, constantly needing reassurance and validation and understanding that insecurity came from lack of understanding by others..... My life has been a fight to fit in, be like others, settling for less than I deserved because I felt so misunderstood. I was only diagnosed few months ago and the difference I feel on meds is like night and day. Be as kind to yourself as your are to others
Thank you. I am definitely continuing to work on "giving myself slack." A big part of that is the acceptance that the majority of these things are beyond my control. And that many of the methods I'd developed over the years were masking behaviors or very unhealthy attempts at whipping up motivation.
Motivation is one of the words I have a hard time with, as it relates to people with ADHD and how different it is for neurotypical individuals. It reminds me of the distinction in the phrase "quality of life," for someone like me who experiences chronic, intractable pain constantly. When this phrase is used in this context, it belies the life and death nature of getting adequate pain relief. This isn't a nice to have, that provides a modest improvement in your quality of life. It's the different between no life and at least some kind of life.
At any rate, I used to make ever little thing carry the weight of world ending consequences if I didn't do it. And it has utterly destroyed my health mentally and physically. I'm grateful I've been able to leave that behind. It tries to come back now and again, but now, especially with the diagnosis, I can take a more circumspect view of things, and focus on what I can do right in the moment. And just as importantly, what am I actually obligated to do, in just this short moment. Usually, that amounts to breathing. It really has helped to focus on the reality that someone is not going to come barging in and demand something or question my use of time. Those inner voices are powerful, and I still struggle to set aside that sense that I'm always working on the wrong thing at any given moment. But I just have to keep coming back to the truth that I have to trust myself in my understanding of what I'm capable of right then. That my ADHD brain works so differently than others, that I have to work on certain things sometimes to make the overall work possible.
Thanks again for your compassionate words, and I also hope you are giving yourself room to grieve and process the death of your friend. I actually come from a long line of funeral directors and am well versed in the importance of the grieving process. I also understand it takes a lot longer than most people think. And of course, it also varies significantly from person to person and the kind of relationship it was to them.
Grief helps us incorporate the reality of our loss so that we're left with a scar versus an open wound. Or, as is often the case, a wound that appears to be closed but has simply been buried. So many things like this fester, and then surface in ways in that can seem completely unrelated. I've found that the source of many people's emotional and relational issues often goes back to something they didn't process fully. In a world that often doesn't want to hear about our problems, it can be extremely difficult to see these processes through to the end due to the pressure to be "normal" again. Thinking of you and hoping you've had the opportunity to process your loss.
Gee it feels like I am talking to myself 😅. I'm quite speechless how eloquently and with such clarity, you explain everything that I have in my head. When I crashed last year I realised I must have been depressed for years. I also know the depression was years of mental strain trying to be like everyone else when I clearly was not. And the nights of thoughts running wild trying to figure out if I spoke to much at work that day.... or I would play a specific interaction over and over in my head and wonder if I should have said something other than what I had said..... exhausting! You hit the nail on the head.... the grief opened unhealed wounds. The meds help my inattentive adhd but i really need to get a handle of the scenarios that speed thru my mind sometimes, the ideas I have.... I am in a good space but really need to harness the creativity so need to learn how to be calm amidst dealing with being adhd. THank you for your words. Just a lot going on in my head and it's as if I was locked in a box for years and now someone has let me out..... kind of childlike in taking in the world as I see it thru new eyes.
Thanks. I'm glad my words resonated for you. That is actually an important part of why I take the care I do in writing my comments. I've found that so many struggle to put words to some of these things. I happen to have honed this skill over the years. In my younger years, I wanted to be an author, but ended up in programming. I still find I write quite a bit, though. I guess it's still in me somewhere.
I'm going to send you a DM with a recommendation about medication that has helped me tremendously with precisely what you've mentioned. I don't think this about you needing to get a handle on your thoughts. I recognize some symptoms, so I'll send a message on that.
We all have struggles. The Lord Loves us because We Are His Children. I don't think the details would matter to those that pray for you. Those things are not important. You need prayer and they are praying for you.
I agree with you about the opioid crisis. The opioid crisis, as they call it, has more to do with law enforcement not being able to stop or reduce the supply of illegal drugs. Chronic pain saps your energy. It is like having a sink full of water and pulling the stopper. It is not something you can explain to anyone.
It might benefit you to see a psychologist. They can help you understand your behavior and give you advice on ways to change it. Just remember it takes time. God Bless You ✝️
I recognize that those praying for me and my family would almost certainly not care regarding the details. Unfortunately, I experienced a lot of judgement in my younger years related to my ADHD and health issues. I think even back then, had I had a diagnosis, I'm not sure if it would have mattered. While we've advanced in understanding of this issue, I feel there is still a prevailing attitude that it's largely an excuse to be lazy, sloppy, etc. I've always been fairly transparent, which includes the things I struggle with, and that led to people getting exasperated with me. In fact, I was often met with, "We all have struggles/issues." Which in that context was them telling me to "stop feeling sorry for myself," which I don't think I was, I was just expressing what was going on. I think it was also a polite way of telling me to shut up about my problems. I can understand everyone has their own issues, but as a fundamentally transparent person, who has had an incredibly strong drive to be understood, I've often shared more than they were willing to hear. I can understand that, but it's left a lot of scars, including being a bit triggered by, "We all have struggles." I want to be clear, I understand that wasn't your intent, and rationally, I know that. I just notice I emotionally flinch when I hear that phrase. For one thing, not everyone has the same degree of struggles. And that has a direct impact on their ability to function in a world designed for "average" people. When you're not a neurotypical person, it mostly seems to work against you, as I'm guessing you've also experienced.
Thanks for your encouraging words, and be blessed.
Yup. Drugs are a racket. The "War on Drugs" is a war on American citizens with the explicit goal of "disenfranchising civil rights and war activists" with a cherry on top for big pharma profit. Don't get me started on Vyvanse - a slow acting extended release form of dexadrine, a 70 year old dirt cheap generic.
Anyway, I didn't do homework in junior high and before I went to HS my parents shipped me off to desert survival rehab for the summer to fix me. Even though I never did any drugs including alcohol they told my parents to stop my ADHD meds and I lived the next 25 years thinking I got over ADHD because I could read and my problems were rooted in me being an addict. Shortly after rehab I started using ETOH & THC until I got sober at 21.
Now that I'm medicated, I'm not so sure I am an addict. BUT I still see value in the 12 steps. You say you feel guilty about the details of how your decisions, while affected by ADHD, were your decisions and they effected others. This isn't really any different from decisions drunks make and the harm they cause. There are non-drug 12 step programs you might want to explore. Part of the steps is making a list of the people/institutions you have harmed, what you did, and why and then making amends, and making a decision to act differently in the future.
It's generally thought you need to join a club and get 12 step guidance from others, but Alcoholic's Anonymous is a quick read at 164 pages and it is freely available online in any form you can imagine. It might be worth flipping through and mentally replacing every instance of alcohol with "poor behavior rooted in ADHD." Hell, I bet there's a website that will do that.
I'll be honest, I wasn't expecting this response. I was actually the totally straight laced kid. Never got in trouble. Was a major people pleaser and was terrified of getting into trouble. So, it was never a case of me being rude, or doing something to someone because of the ADHD. I think it's interesting how sharply I experience the divide between what is thought of as the stereotypical ADHD kid and my own childhood. I find my issues are really centered around adulting.
So the decisions and actions I'm referring to are things that have impacted me, and my wife and son to a degree, that have to do with people thinking I didn't try hard enough to resist personally unhealthy behavior. Talking about things like over eating, poor spending habits, or having severe difficulties in maintaining my oral hygiene. I've lost several teeth at this point, and getting things sorted at a dentist are complicated by me being between jobs. I guess it's the people pleaser in me that fears disapproval.
I wish you luck on your own journey. We are truly a neurodiverse species.
Hey, I was a very sheltered 21 when I got sober. I'm not talking about terrible crimes. You are having feelings as a result of your behavior. That qualifies you to look at your feelings. Heck, there is literally a 12 step group called OA (over eaters anonymous). Not saying you need to start going to meetings. I'm just offering up a tool.
There are 12 step forms (step 4 & 9) with columns you can fill out:
Who: My wife/family
What: I bought a toy I couldn't afford
Effects my: personal relations, pocket book
Who: me
What: poor oral care
Effects my: personal relations, sex relations, pocket book.
It's weird. You KNOW all this stuff, it's in your head somewhere. It bothered you enough to post here. But listing and examining it can bring a peace and ability to recognize & change your behaviors in real time. The 12 steps are well grounded in ancient religion/philosophy - it's not something that a drunk just created in the 30's.
I think self compassion is something you desperately deserve. I’m saying that as someone who isn’t perfect either. Bad choices? It sounds like you might have had chronic, intractable neuropathic pain. If so, that is a pain indescribable to others who haven’t experienced it. They cannot understand despite whatever explanation you try. I had a nerve injury with CRPS for 3+ years. I would rather endure childbirth 10 times without an epidural than return to the pain I suffered from my nerve injury. My mom actually told me to put makeup on for a doctor appointment. Uh, a million NOPES. You couldn’t care for your teeth, and still can’t, because you have terrible pain when you try to do what you should. I mean, what are you supposed to do? I am not trying to give everybody a pass on all challenges. However, what you’re describing is pretty severe. Forgive me for adding 3 medical thoughts you likely already know. (1) opioid induced hyperalgesia is real and sometimes with the right Pain Medicine specialist you can at least taper down without having worsening pain (NOT WITH A PCP—-only a pain medicine specialist like anesthesiologist who subspecializes in pain medicine). (2) sometimes a paddle type spinal cord stimulator (not the regular one—has to be done by neurosurgeon because needs a laminectomy I think) can help intractable cases. (3) A new treatment option exists called a dorsal root ganglion stimulator that maybe is worth asking about. I have no idea. I just am mentioning these because I was a CRPS patient and live under the shadow of it returning. I keep 1 eye on Pain Medicine advances. Peace and comfort to you. And no, not everyone has the struggles a neurodiverse person with chronic pain has. Those are especially difficult struggles. And the medical literature is starting to show people with ADHD may be at higher risk for developing chronic pain or central sensitization.
I appreciate you taking the time to write. I have nerve damage in my back and have been on opioids for about 15 years. I haven't experienced hyperalgesia, and when I was force tapered, I increased in my pain dramatically for the three and a half years I was tapered. I am now back to my previous dosage, and while the pain is still bad enough that I'm basically stuck at home, at least I can sit in my specialized office chair and work from there for a full day. I actually have a spinal cord stimulator in, but in the end it caused more aggravation than it helped. During that period I was repeatedly gaslit. One of the darkest times in my life I'm still recovering from. It's honestly produced a lot of distrust in me for the medical community. The things that were said to me, no one should have said to them.
I've had nerve ablation, I think is what it was called. But it never really did much. And of course endless epidurals until I finally said enough because it wasn't helping even a little bit anymore. I was even working as a pain advocate during those years, mostly writing and researching. I read so many medical papers. The bias in them is incredible. Actually, once I get a bit more settled in, I plan on using AI to examine them for sentiment analysis and areas that might help show which studies can actually be relied upon and which ones tell a story that was ordained before the first patient signed up.
I seem to have a hypersensitive nervous system. So sensitive to noise, bright lights etc. certain types of pain. On the other hand, I've passed more than 100 kidney stones and have often been able to continue working, so I really don't understand. My body is flippin weird. I really do appreciate your understanding. Chronic intractable pain is inconceivable until you're in it. Nonstop pain for twenty years. That's when the worst of it started. Many of my friends and family have tried to understand over the years, and I applaud their effort. I don't expect them to get it. But I was incredibly surprised and how different the experience was from what doctors and nurses tried to tell me it was versus my first-hand experience. Hence, the gaslighting. I'll stop now. Still pretty angry about all of that. I know they are in between a rock and a hard place themselves, many just trying to protect their practices from the DEA. Still hard though.
As a physician, I am so sorry for how horribly you were treated. Truly, we understand so little about pain, how it differs between people, and sensory differences. There’s no way to measure it objectively, and sadly that seems to equate with “that person is embellishing their pain” etc to many physicians. After watching my kids who both have autism navigate the world, I have realized how little we really understand about so much. And how much we in medicine could learn from our patients. Feeling heard and validated as a patient is so important. Feeling blown off, abandoned, and left to suffer is no way to treat people. I hope you can find some peace and comfort.
I deeply appreciate that. I have met some amazing doctor's in my time. I think fear gripped so many of these people. They went from calling the CDC guidelines crazy to following draconian policies that were far worse. I have so wanted a doctor to actually stop and listen to me. I'm pretty observant as well as being fairly self-aware, physically. I could describe things in detail, but it never mattered.
I don't want to belabor the point. Again, thank you for your kindness and compassion. I'm still on a pretty hard road, so I always appreciate when a doctor can identify with what I'm going through.
I was diagnosed a few years ago at age 52. Like you, my realization about how ADHD impacted so much of my life has come in a steady flow. At one point my wife said, "you know, not everything is related to ADHD!"
She's right, but a ton of stuff is and past and current behaviors continue to click with me, that is totally my ADHD!
My biggest advice to others and to myself (if I can remember to apply it) is to be extra kind to others, since you have no idea what they're going through, and be even kinder to yourself because you do know what you're going through. St. Peter never kicked someone out for being too kind.
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Mine is purely tension but ofcourse needing to do something is not good enough reason to actually do it says my adhd brain lol. I am 49. what has been a huge part of my self acceptance is the fact that my partner does not make me feel like a failure, like the rest of the world did.... teachers, family, i was never making the best of oopportunities but only now realised that was all the adhd. Took jobs that i could cope with because too much responsibility would break me, not because i was not capable but because my adhd brain could focus and eventually I would drop a ball, two balls sometimes all the balls!!! So that just develops into insecurity... a vicious cycle so you never really get to reach your full potential. So at 49 I am finally starting to love the real me inside, with all my faults.. my husband calls them quirks and I like that positive spin. But there are still many challenging days when I choose to have a "me day".... sometimes I nap a lot, and I give myself the grace to have off days, sometimes I read or watch series, just do whatever i want guilt free..... it allows me to function better when its my on days. p.s. Stay away from negative people, they suck the energy out of you. xx
I am also learning to be less hard on myself, and I know that will take time. 
It really has helped to focus on the reality that someone is not going to come barging in and demand something or question my use of time. Those inner voices are powerful, and I still struggle to set aside that sense that I'm always working on the wrong thing at any given moment. But I just have to keep coming back to the truth that I have to trust myself in my understanding of what I'm capable of right then. That my ADHD brain works so differently than others, that I have to work on certain things sometimes to make the overall work possible. 
Anyone else gone from 36mg to 54mg of Concerta XL and suddenly it no longer works?
Diagnosed at 60 and learning new vocabulary
Struggling to connect, always starting the conversation
Is this a good idea?
