The ADHD Medication Shortage Survival Guide
Imagine going to get your prescription medication, and being told that it's simply run out.
This is what's happened with ADHD medication, a highly 'Controlled Drug'. A National Patient Safety Alert was issued last week advising healthcare providers to prepare patients for the global shortage.
However, seeing as ADHD medication has to be prescribed by 'qualified' psychiatrists, who may as well be Taylor Swift in terms of how hard it is to access them (with 7 years waiting lists in some parts of the UK), this is unlikely to happen anytime soon.
For the first time in 5 years, I was recently unable to take ADHD medication (Elvanse) for 4 days. It felt like I'd stopped wearing glasses that I needed to see - but for my brain. It felt like living underwater, with everything becoming foggy, but as an ADHD Works Coach, I also know the strategies to help me deal with this.
Here's what I'd recommend:
1) Talk to your doctor (especially if you plan to self-medicate)
If you've met 1 person with ADHD, you've met 1 person with ADHD. Not everybody takes ADHD medication, but for those who do, it's likely to affect everybody differently.
People with ADHD typically have to go through some months of finding the right type and dose of medication called 'tritiation' when they first start. I know this well - being on too high of a dose made me extremely unwell, including having panic attacks and my skin going grey. Some people, like myself, are advised to take our medication every day, whereas others take it on certain days.
It's important to talk to your doctor about your unique situation, and what you want to do in light of these shortages. They may be able to change the way a prescription is made up, and may be able to offer alternatives.
This is also likely to be extremely stressful, so ask them to refer you to therapy to ensure you have support in place (yes, it might take many months - but it's better than nothing)!
This is especially important if you are planning to change how you take ADHD medication, such as by taking it on certain days or splitting out a dose. I really strongly advise caution in doing this, because the side effects can make us extremely unwell - this medication is 'Controlled' (apparently!) for a reason.
2) Start a medication diary
If you plan on changing how you take ADHD medication, or can't access it, start a medication diary to log how you feel each day.
As there's a 30% developmental delay in executive functioning skills including self-awareness linked with ADHD, this is really important to ensure we can stay aware of what the medication actually helps us with so we can identify and implement new strategies.
I did this when I was unable to take medication, which helped me to understand that it wasn't just me 'overthinking' (ironically - the opposite). I was RAVENOUSLY hungry, and just writing down the several meals I was eating every day helped me to see that this wasn't normal. I also zoned out completely of people talking to me at times, as though I had no control over what I paid attention to, and felt as though I couldn't think properly.
I also wrote down what helped me to feel better, such as going out for a walk, and any changes that other people noticed in me. This will be different for everybody, but it's good to note these things down now for future conversations about medication.
Being able to see the difference 'on' and 'off' medication is helpful to remind you that it's okay to need it, just like anybody else who takes medication prescribed to them.
3) Talk to other people (and ask for help from a support network!)
If you are planning any changes in how you take medication, or feel anxious about the prospect of having to do so, talk to someone. Yes, your doctor, but also the people in your life. From your employer to your family and friends, this is really important to ensure that they can help you with any transitionary periods and to reduce anxiety.
For me, this was helpful to ensure that I wasn't overthinking about taking or not taking the medication in my own isolated bubble. Telling friends I was spending the weekend with meant they checked in on me and offered me help, not judging me when I went to bed at 7pm or got distracted whilst speaking to them.
As ADHD medication helps us with our executive functioning, and literally to think, the impact on our work may feel most stressful of all. This makes sense: it's hard enough to speak about ADHD at work, without having to alert our colleagues to the fact that we take medication that apparently is running out. Although it can feel really scary to do so, it's important to remember that this is not your fault and they are there to help you.
Employers may have a legal duty to make reasonable adjustments to support employees with ADHD, and this is going to be even more relevant if we are unable to access the medication we need. Talking to someone you trust, or an ADHD Champion, can be a helpful first step, and keeping lines of communication open as you navigate this together.
Even if you don't have ADHD, you can alert your employer to this situation with a template letter here.
4) Apply for Access to Work (& get an ADHD Coach!)
If you're in the UK, I strongly advise applying for Access to Work, which can help fund support like a virtual assistant and ADHD coaching. This is not a replacement, but medication is ultimately one tool in a toolbox of potential support.
Personally, I found ADHD coaching much more beneficial than medication in itself, because pills don't give skills. When I first took medication, I could literally see the mess around me that I'd been oblivious to my entire life - but I had zero skills to handle this. I had no idea how to clean, no routine, and if anything, it all became more overwhelming - so I just left the house and ignored it (literally and metaphorically).
This is partially why many people struggle with ADHD medication, because suddenly having access to new parts of our brain isn't that helpful without understanding how to use them. Accessing support like ADHD coaching or a support worker can help you fill in the gaps manually, such as by getting the cleaning routines for mess you know is there, but might not be able to see as well as you would otherwise.
If Access to Work isn't an option, you can get ADHD coaching here and join our ADHD group coaching starting tonight here.
5) Pay extra attention to your routine
As an ADHD Coach, the number one thing I am helping people to do is create a routine. I like to think of it as having someone standing in the kitchen with you whilst you're washing up - this helps you to do it, because it's less boring, but after a while, it becomes a habit.
Not having ADHD medication will mean we need to try and prioritise auto-piloting 'important' decisions as much as possible, especially in relation to our self-care. As executive functioning challenges can commonly arise with tasks involving lots of steps, such as cooking and eating a meal (and cleaning up!), think ahead to important areas of your life and try to prepare in advance, such as batch cooking food on the weekend to eat in the week.
The secret is making the things you don't want to do as easy as possible, and the things you do want to do, but aren't necessarily helpful, as hard as possible. For example, my best ADHD tip is to buy an alarm clock and try to keep your phone away from your bed as much as you can, avoiding going on it first thing in the morning. You don't need an ADHD coach for this - you can ask the people in your life to help you stay accountable!
6) Exercise
I know exercising is an elusive concept for many people with ADHD (such as myself, who can seriously struggle to leave the house at all), but it is extremely important, especially if we're unable to access medication.
Researchers have found that exercise can have the same impact on the brain as ADHD medication, just for much shorter periods of time, by provoking changes in many of the same neurotransmitters such as norepinephrine and dopamine.
Again, the key to this is making it as easy as possible, and prioritising it. I hate exercising, but knowing that I'm not going to be able to access my medication sustainably has forced me to step it up - literally. I was on a Lake District retreat with Meg Holloway when I stopped taking my medication, and gong for a walk in nature made me feel a million times better.
The only challenge is actually getting out for that walk without being on a retreat! Like all things ADHD, it's good to try and incorporate novelty, adrenaline, and interest into exercise, such as by trying out a new sport or joining a team like on GoMammoth (I was on a football team last year!). You can also incorporate your friends, such as by asking them to help you to exercise together, like going for a walk.
7) Focus on your diet & nutrition
Although I wasn't diagnosed with ADHD as a child, my tendency of being so clumsy that I'd regularly walk into tables right in front of me was noticed. As a result, I was given fish oil - which has actually been proven to be very helpful for people with ADHD.
Before I took ADHD medication, my diet largely consisted of Diet Coke and chocolate. Ironically, because I knew it made me less hungry, I've prioritised trying to eat as much as I can over the last few years, to avoid becoming too thin. So not being on the medication and feeling extra-hungry meant I automatically reached for chocolate and McDonalds (2 times in 3 days!).
I also used to self-medicate with alcohol and caffeine, drinking up to 10 coffees per day. Again, it's important to be aware of any changes that you may naturally be prone to taking on or off medication, and to put in appropriate measures to look after yourself. Surviving on sugar and caffeine highs will lead to energy crashes, so try to get ahead of your own dopamine-seeking brain by supplementing your diet with vitamins and healthy, nutritious food - ideally, 3 meals a day, and plenty of water. Ultimately, this is what gives us energy!
8) Try ADHD-friendly mindfulness and breath-work
Mindfulness is not something we'd automatically associate with ADHD, but there's plenty of resources tailored to ADHD brains out there (including chapter 'Z is for Zen' of ADHD: an A to Z!).
People like Josephine McGrail, Meg Holloway, Joseph Pack , Amy Polly & Jane 👃 Tarrant offer accessible routes into mindfulness. For example, just counting to 5 and trying to consciously breathe into my diaphragm has been a helpful grounding strategy when I've been feeling stressed out, or bored on a walk. This strategy literally bores me to fall back asleep if I wake up in the night.
Ultimately, this is about being able to think before automatically reacting, and the more conscious we can become of how to do this, the better. For me, I try to do yoga every day, nothing the thoughts popping around my brain for an hour until it eventually exhausts itself. This is especially helpful to manage Rejection Sensitive Dysphoria - you can also do our course on this.
Try to find something that seems fun for you - it doesn't have to be sitting in a room with nothing but your thoughts, but anything that helps your brain to switch off. (Or check out Josephine's upcoming retreat!)
9) Be kind to yourself
Having ADHD in the first place can be exhausting, let alone fighting to access the support you may need for this... and that suddenly being potentially taken away, with zero warning.
It's okay to be angry and sad at the state of the world, and it's good to process this with a professional such as a therapist, or talking it out to a loved one.
Conversations about medication, especially when it's so highly stigmatised in our society, can feel stressful and triggering, so try to manage what you are consuming - especially online. Panic triggers more panic, without a solution, but remember that you did survive without medication before, and you can if you really have to again - you have got yourself this far in life.
Please be kind to yourself and listen to your body, especially during any changes of how you may take ADHD medication, which can cause a significant transition in the way you function day to day. Try and remain calm and remember that everything medication helped with, can be helped by other means. Be nice to yourself, take it easy, and take as much time or space as you need to navigate this transition. If that means time off work, that's what it means: you and your health comes first.
10) Raise ADHD awareness, education and action
This is obviously a terrible situation, but it's also the latest in many metaphorical punches to the neurodivergent community. From national media outlets tearing down ADHD medication and assessment routes, to ADHD and Autism assessment routes simply being closed to anybody who isn't in crisis mode in York, the response to increasing numbers of people needing support is overwhelmingly terrible.
I spoke to Directors at the World Health Organization about this last year, raising these exact issues. They said I should carry on doing what I'm doing in running ADHD Works and providing support. Although raising awareness, education, and support for people with ADHD shouldn't be on me, or you, this is the reality that we're living in.
As ADHD wasn't diagnosable in adults until 2008, there are now unprecedented numbers of people seeking the support they should have had access to earlier.
Instead of simply cutting this off and ignoring it, the Government should take action by reviewing the situation as a whole, providing increased training to healthcare providers.
You can sign the petition calling for this to happen here, which has reached 4000 people, and write to your MP in under 5 minutes here. I encourage you to talk about this as widely as possible - this will impact everybody, from employers to schools, parents to children, individuals to families, and so on.
You can also learn everything you can about ADHD this ADHD Awareness Month, including joining the ADHD in 30 Days course with 4 x group coaching sessions starting tonight.
Please look after yourself, talk to the people around you, and stay as calm as you can. Turn your pain into purpose, raising awareness about these issues, and please do not feel any shame or stigma around ADHD medication. It is prescribed as legally as anything else - ADHD is a real condition and taking medication for this is not a bad thing. If anything, it shows that you have taken responsibility in accessing the support you need.
Finally, you can read ADHD: an A to Z which is a whole book about how to manage ADHD, with only one chapter on medication!
On Friday 6th October at 1pm, I'll be talking about this in more detail with Phil Anderton of ADHD 360 - so if you have any questions, join us for the LinkedIn Live here.