As I left the dietician’s office after our second appointment I wanted to cry. I did not, at that time, but later that evening, as I was taking a bath I did.
I also began to unpack what about this experience was so extremely uncomfortable for me. I wanted to persist, I wanted to not give up. I actually love food, make time for healthy cooking and I was extremely motivated to make this work. But something in the way the two meetings so far went left me with an intense feeling of hopelessness.
(It has been a long while since I wrote a blog with such direct personal reflections in it. So I hope you’ll bear with me)
Why so Sad?
I could not quite unpack why this visit left me so deflated. On the surface, I felt super proud of myself. I’ve been consistently showing up for my intention to be open and vulnerable about my ADHD. That is, whenever I feel it affects my treatment in otherwise unrelated health care issues. Fully expecting not everybody will be up to date on the diagnosis and what it means. I’m happy to educate where needed and invest that extra time to emotionally regulate and do it.
I had been following up on a complex process of getting a doctor’s referral, setting up an appointment, going through the intake, etc. And then, I had actually made it to two meetings ON TIME! And I had disclosed my ADHD and been open about the extra challenges for me in managing my weight, after getting COVID in October of 2020 and failing to recover well. I explained how I was having terrible problems getting my endurance back to normal levels, despite going out for frequent walks and bicycle rides with my family. Of course: not adjusting the amounts I ate to my decreased physical activity led to the inevitable weight gain. On top of that, pre-menopause-and the hormones used to treat it (needed because the decline in Oestrogen levels severely affects this ladies’ ADHD, but that is another story!)- were wreaking havoc on my metabolism.
I had expressed gratitude for being offered this chance to work with professional help for my diet, as well as my physical fitness (this was what I had originally requested the doctor’s referral for, but I got a bonus referral to this service) as part of a long Covid recovery plan. Yet I had also been forthcoming about my previous challenges with changing ingrained habits long-term, and sticking with those better habits, or re-initiating them after a lapse. I had expressly mentioned that I was explaining all this not as an excuse, but as a way to be open about the problem-solving that I might need to do to find out what works for me in this situation. I had in no way put the burden of my success on the dietician.
All I did was try to explain the tough challenges of habit changes when you have ADHD, especially when the changes we make dysregulate habit-stacks we have carefully built for years.
Habit stacks can be fragile
As I sat in the bath crying and unpacking what happened in our interaction-and again, as I sat writing this blog- I wondered if there is a common thread here for people with ADHD when it comes to accessing care or treatments that are not central to ADHD, but where out ADHD or other neurodiversity show up in our ability to comply with treatments, self-care regimes a specialist might provide, medicine protocols, weight management, etc.
Precisely what makes the downsides of having an ADHD brain so frustrating is that its effects show up EVERYWHERE. Our daily life is full of Executive Functioning Challenges under normal circumstances. And we have to meet each one with grace, introspection, and a willingness to be super honest about where our brains mess us up. Then we need to bring a problem-solving mind ready to meet that challenge, and a never-ending supply of hope that we CAN do better in the future IF we find the right ways to “hack our brain”.
But for all those areas where we have already done that hard work: the need to change what we have built can hit us like a ton of bricks. Our lives are often precariously stacked skyscrapers full of strategies and coping mechanisms. Many of them depend intimately on one another.
Since habit stacking (https://jamesclear.com/habit-stacking) is so useful when you have a hard time building NEW habits, that sadly also means the built-in risk of a full-blown habit stack collapse when one domino in that habit-stack is toppled! (This video from How to ADHD is a great place to start when that happens to you!)
This happened to me when I got sick with covid, could not cook for myself and lacked the energy for a good long time to do anything outside of “survival mode tasks” like raising my kids. And I had a helluva time scrambling to get back into my previous habits to run our household as a joint effort. And those were well-worn brain paths!
When what should be help feels like an attack
I think now, that this was part of my immense sadness leaving the dietician’s office. Their inability to see this carefully constructed system of self-support and how much effort it had taken me to craft it over the years
Within the first 30 minutes of our first meeting, I watched my self-advocacy and attempts to educate them about ADHD be squarely pegged as a victim mentality. When I went there willing to take full responsibility for my progress! And that is why I needed to be open and out about how my ADHD plays into my eating habits.
Then in our second meeting, within the first 30 minutes, I was handed a series of “you are doing this wrong” comments on my current eating habits in quick succession and a stern voice. (Yes, of course, emotional regulation might have made this seem worse to me than it actually was.) This was topped by a plain refusal to share practical tips “what to do instead” or menu items to replace certain foods with. Instead, I was handed some general “healthy, balanced food advice” that I already know by heart, and have been trying to practice for YEARS.
When I asked for a meal plan or something to follow to make it easier for myself I was given the standard speech that this is not about going on a diet. It is about changing my eating habits long term. So no plans! I needed to learn to plan myself using the basic ideas! No further explanation from my end was able to budge them in that decision. It did not seem to help that I explained: I understand this and want to commit to it, but I need to make things super concrete for myself to be able to make that change.
Why we cling so hard to old habits
Something I eat a lot, dry wholemeal or fiber-enhanced crackers, was firmly criticized as being less healthy than fresh bread. I get that, but the reason I often eat crackers is that keeping a fresh supply of bread at two locations (home and workplace) is impossible for me. I end up throwing out moldy bread way too many days. Which is both a health hazard, a waste of money I absolutely cannot afford to waste, and downright disgusting. So I buy crackers a lot, and freeze the bread that I do buy…
This is just one example, but it got me to thinking that there is solid reasoning and deeply lived experience behind almost every one of my food choices and eating habits. And having someone punish me for them and dismiss my input on how I arrived there, was awful. Especially when they then refused to give me clear alternatives that I can actually implement. The idea of giving up the crackers and having to go back to wasting money and bread on my inability to keep my stores fresh and up to date, filled me with shame and dread. It was a basic fear of a habit stack toppling and being forced to go back to my prior ADHD chaos in that micro area of my life.
Instead, they could have focussed on what I am already doing well and seeing how we can spread those good habits far and wide. I’m really not that unhealthy a person. I like cooking from scratch 6 days out of 7 together with my partner and we only resort to ordering in or getting snack food once every 14 days or so.
I want to take my responsibility
I have NO INTENTION of staying stuck in the drama triangle about what is not working yet about my eating, and straying stuck in a victim role. I DO have an issue with grazing evening treats after my meds wear off. Especially seeking out the dopamine rush that a sugary snack can give me then, in the rebound period of my meds wearing off. One of the best things that were offered was a list of alternative foods for that moment in time. But most of the things on that list required three things that are hard for a tired ADHD-er at the end of her day and with little patience left…
a) A well-organized fridge
c) A stock of the fresh produce ingredients needed to prep
But with this list in hand, I was able to figure out some alternatives that I can prep ahead of time and that will keep a lot better than the freshly made ones, while being almost as healthy. Through no help from them. Just because I like to cook and had parents who trained me well and instilled a joy for experimenting in the kitchen. The list gave me a place to start problem-solving and implementing. And holding it in my hand, and working to create a personalized version of it. That gave me hope that I can DO this. Which is what all the other advice they gave me did not do.
The whole thing triggered a minor trauma of being misunderstood, spoken over, and not listened to, and then being handed advice that is either useless to me or that will actually make my situation worse when I try to implement it (because it risks toppling some of the habit stacks that keep me going).
Is this overly dramatic?
I still have trouble using the term “trauma” in relation to something as minor as a visit to a dietician. I want better language to distinguish what happens to rape victims, soldiers, and Ambulance nurses- like my dad – when they face horrible things every day, that end up haunting them. I believe there IS a difference between these life or death situations and the harm that is being done by being gaslight in tiny ways for years because your brain does not work the same as most people. I feel like a giant whiny baby when I write this down about myself using language that is also used for the prior situations. I am going to have to talk to myself very sternly before I dare to push “publish” on this blog and share it through social media. I read it from the perspective of some people close to me who have that “don’t be such a snowflake” attitude and it makes me cringe.
It’s so silly. I am much more compassionate with my clients than I am with myself, sometimes. I can get so angry on their behalf when they tell me similar stories! And I can talk to them all day about how the brain does not distinguish quite well between actual life and death danger and the danger we perceive when we feel misunderstood, threatened, and disconnected. And that is my best trick for being more self-compassionate. I speak to myself and pretend I am my own coaching client.
Different types of trauma exist, and the kind we get from persistent negative interactions with people we depend on is one that needs to be talked about
Seriously, the more I work with ADHD clients the more I truly believe we get mildly (and sometimes severely) traumatized by this continued experience with therapists, healthcare workers, and other types of support system personnel. People who are meant to help us. Yet they seem to have no understanding of our daily and common challenges. It’s worse when they are also not willing to listen and understand when the client has the guts and the vulnerability to explain their daily struggles. We are too often disbelieved and spoken over and told to suck it up and try harder, or even treated like we are “playing the victim card”.
Which all adds to the already existing trauma of feeling like we must be Lazy, Stupid or Crazy (“You Mean I’m Not Lazy, Stupid or Crazy?!” is a great book on ADHD, by the way!) for not knowing how to make all those generic solutions – and life in general- work for us. This does create a subtype of trauma and I do not want to leave that unnamed and undiscussed because we are still developing better language to talk about what happens there… without diminishing other people’s experiences in ANY WAY.
The biggest danger in those tiny hurtful experiences is in how they add up and compound into a skewed view of the world. Over time this can build up into something dangerous. James Ochoa has a great piece on Medium where he calls this effect “intervention fatigue” and it is a HUGE problem because it means a lot of people stop seeking out any form of help. Because they expect to be made to feel worse about their ability to do better or deserve better. We stop believing change is possible or support is out there.
This is not directed at you if you already work hard at listening to your patient/ client/ people in your care and believing them when they tell you about their experience!
As a side note: I want to make it absolutely clear that I also see this as a systemic problem of health care and social care systems that are underpaying their most valued workers and managing for perceived efficiency by pretty ridiculous measurements, and often under educating their workers. All these management strategies and policies are often implemented without looking at the actual long-term impact of their so-called “ efficiency” on the level of care and wellbeing they are achieving. I see many people in the system who WANT to operate in a more caring way, who want to improve the systems they work in, and who are punished for it instead!
So… Am I going back there?
The whole experience left me terribly stuck on scheduling a new appointment with this professional after my summer holiday to tackle my continuing weight problems due to the long covid and my pre-menopause treatments. I have begun to dread a new visit so much that there is a giant wall of awful in front of picking up that phone and making an appointment. Let alone sitting with them in that office and defending myself against what feels like a series of mini attacks.
I guess that is why I often resort to doing my own research and designing my own experiments for many of the improvements I have made in my life. It is to avoid having to deal with all the misunderstandings and having my internalized shame and ableism triggered again. Sometimes it’s easier to do WITHOUT the help, than WITH the help that brings on the shame. This is just one example.
I’ll keep trying…
I am just going to trust my persistence and give myself a bit of grace. I can work on better alternatives for my evening snacking by myself in the meantime. I’ve already involved the family. In the end, I believe in my ability to handle this: I will either come up with a plan to tackle this even better at home. Or I’ll have the courage to make that phone call and share this blog with that dietician. Or, finally, I might need to find another dietician because this one is not a good fit. Because I am happy to report: I did not encounter similar problems in opening up to my physical therapist about similar challenges with my ADHD and rebuilding an exercise habit. In fact, they have been nothing but supportive! As has my yoga teacher, who I often need to ask for modifications…
So please, despite all your rotten experiences, keep believing. There are people out there who get it already or who are willing to listen and adapt their services to our needs! When we dare to step up and express them.
PS. If you struggle with feeding yourself healthy ways because of your ADHD this post by Rene Brooks is one of the best ever written. 100 No-Cook Meal Items For When You Refuse to Adult
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