The wait is unbearable and seems neve... - CHADD's Adult ADH...

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The wait is unbearable and seems never-ending...

Tarknassus profile image
5 Replies

I'm waiting to be assessed for ADHD. I started this application a couple of months ago and had to go privately (as our NHS area doesn't even cater for adult ADHD at present). I mean, sure it's better waiting 2 months than the nearly 4 years some are having to with our NHS. But as I've found, waiting and ADHD aren't the best of friends.

As for why it's unbearable? Well, apart from the waiting, it's the rollercoaster of thoughts, feelings, etc that I've gone through. I've been absolutely 200% convinced I have ADHD, to wondering if I'm wasting time and money in pursuing a diagnosis. I've been better in my mental health because ADHD seems to answer my questions about how I am the way I am, but also experienced the lows too - doubt, depression, fluctuating emotional states. Randomly bursting into tears for no reason, bursting into tears because of the possibility of ADHD.

I want the assessment over - but I don't want to do it, either. What if I'm wrong? What if I'm just a messed up individual who doesn't fit the criteria in some way? What if my symptoms aren't 'strong' enough to demonstrate ADHD? What if? Never mind the fact if I'm diagnosed I've got to deal with my driving licence and insurance and all that extra crap as well...

I know sometimes it's almost painfully obvious I seem to have ADHD (I'm careful not to label myself as having it definitively), but I can't deal with the waiting. The uncertainty. It feels like my life is on hold until my appointment. I have a huge list of experiences, school reports, parents statements about my 'quirky' behaviour as a child, but I'm scared I will either not use it, or it's not going to come up. It's probably stupid of me, I know.

To top it all off, if I am diagnosed with ADHD, I cannot afford to even consider medication or therapy. It's taken my savings to get this assessment. That's almost another £1k or thereabouts I'd need to get the treatment going before I can transfer it to my GP on the NHS. That's just the medication.

Sorry, this is a rant/vent. Any encouragement or shared experiences would help greatly.

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Tarknassus
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5 Replies
HeyImNotCrazy profile image
HeyImNotCrazy

Don't be sorry for venting this is exactly the place to do it.

I don't have any experience with the NHS (I'm an unfortunate victim of the US healthcare system myself) but I can totally vibe with the fear and uncertainty you are feeling right now as I went through something similar when I was trying to get a diagnosis for my anxiety disorder. Multiple doctors visits (that I had to pay out of pocket for, fuck the US health system), tons of people in my life saying shit like 'are you really sure, it could just be x, y, or z', the internal fear that I was 'faking it for attention' or 'just trying for an easy out to explain my shitty behavior'.

I can tell you even if you can't afford meds immediately there are a TON of resources online you can use to help you with coping mechanisms or tools/tricks to work with your ADHD brain. Meds are great but really they are only 1/3 of the way to deal with ADHD (the other two IMO are therapy/healthy living) so you won't be unable to do anything you just might have to lean harder in one direction for the time being until you can get meds.

I want to reassure you that the community has your back. A lot of people struggle, a lot of us struggle. It might be helpful to join other ADHD specific communities (I like reddit's /r/ADHD and /r/Anxiety) or start watching ADHD specific content creators (How to ADHD on Youtube is a good starting place, she has tons of suggestions for how to live/work with ADHD as an adult).

Ultimately time will march on, the assessment will happen, and your life will go onwards. The fear of waiting can be paralyzing but fortunately IT WILL END. In the meantime lean into the support structures you have, or if you don't have them now is a great time to start building them.

You've got this man. Even if no one else supports or understands know this internet stranger is rooting for you!!!

💪😤🤟

Tarknassus profile image
Tarknassus in reply toHeyImNotCrazy

Thanks for the reply. It's really appreciated.

I've started using ADHD resources, my wife and I have made some accommodations - such as two big whiteboards for work and home. It's good to externalise things to do there, as well as reminders, calendars on my phone/laptop all synced. I've got a few books on my Kindle now (that may get read sometime) aimed at adult ADHD coping/management techniques. I'm still trying to find the right level of to-do list size without it seeming overwhelming too, but that's been a bit harder.

It doesn't help that I think at my age I shouldn't have to rely on these lists, but that's another mental hurdle to overcome. It's very very slowly coming round to the idea that I will have to use these lists to regulate my life.

Meds are understandably just one tool in the kit for dealing with this stuff. I can't afford to begin treatment with them, or after assessment, even to pay for counselling. All I have is the 'lifestyle' part of treatment. Things like I listed above. My parents have offered support for treatment costs, but I can't approach them until I have the diagnosis. Even then, asking for help... not a strong point lol.

I've joined several communities, like reddit, following ADHD people on Youtube (How to ADHD is brilliant) and Twitter, and I've found a Facebook ADHD group for my local area - they recommended I go private for the assessment owing to the lack of any NHS diagnostic services. I may eventually try to go to one of the meet-ups, but social stuff is still a big thing for me to deal with and I'd probably wait until after the assessment.

It's funny when I think about waiting sometimes - was talking to my parents about it, and they said I was never good at waiting. Just another thing to add to the "probably ADHD" pile...

It's one day less now. Still too far away, but one day less regardless :)

Thanks for rooting for me, internet stranger!

Hi, I can fully understand the total disruption/randomness of worrying about diagnosis - like a rubber ball in a tumble dryer, thoughts and emotions all over the place. The NHS will get you a diagnosis - though getting a Private Diagnosis will bring some peace-of-mind, it still needs to be verified by the NHS at their own timescale. For myself (at age 48) I started with a Private Diagnosis, it was about £750, waiting time was about 3 months, from a practice that dealt with ADHD in Adults and Children. Then I went to my GP and started the process from the NHS and it took about 18-24 months (part of this was during Covid). This is the NHS in Wales, and will differ from other Health Authorities, some are quicker, some are slower, but I believe two years is about average. The one thing to consider, if it really looks like you have ADHD, then start to read about some of the non-medication things that can be done help. The one book that I have found useful is 'Delivered from Distraction' by Ed Hallowell and John Ratey - it'll give you a) an idea if you are ADHD and b) good solid suggestions of things to try and help. And a great 30 minute video explaining ADHD is Thomas E Brown's "What is Attention Deficit Hyperactivity Disorder" you can find it on Youtube. And the website understood.org is a good place to look for answers and explainers...it may seem like a long-road, but if you try and occupy your mind reading and learning, the journey will seem a little shorter. All the Best - Mark

Tarknassus profile image
Tarknassus in reply toMark_in_Wales_CVA

My health board in Wales has no provision for diagnosing adult ADHD at present. They are currently working towards it by training people now, but the scheme is already two years behind schedule.

I have no option but to go private sadly.

I’ve got that book (but unsurprisingly not started it yet) and seen the video. It’s really eye opening.

Fortunately my GP will do shared care agreements in the case of ADHD, which is a plus. Until then I am waiting (impatiently) and trying non medication things to see what helps.

Mark_in_Wales_CVA profile image
Mark_in_Wales_CVA in reply toTarknassus

Strangely I've noticed how ADHD'ers unintentionally gravitate towards each other (not just on the internet). Not knowing which part of Wales you are in, there is a support group in Bristol that has (pre-pandemic) met once a month, an old work colleague of mine put me onto it, a few people go across from Wales to meet, have a cuppa and support each other. If it's near to your neck of the woods, maybe give it a try.....they are still on-hold, but keep an eye on aadduk.org/help-support/sup...

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