Trying to explain your dynamic disability is exhausting. The shock people have when you seemed fine yesterday, but alas, today you can't leave the house. Constantly, reluctantly, half-smiling through gritted teeth, when someone says, “But you look well!” because you don't have the energy to explain it for the one hundredth time.
This blog post is for anyone who, like me, lives in the in-between. We are too unwell to be “ok” but also too “capable” to be believed. We might look like we have our lives together to others, but inside, we are desperately clinging on, trying to hold it all together.
What does dynamic mean?
A fluctuating disability or dynamic disability often looks like our pain, fatigue, capacity, and functioning changing regularly. Sometimes, day to day. Sometimes hour to hour, sometimes week to week or month to month.
For many of us, this is very familiar. There are better days, hard days, and days that begin as one and become the other with little warning.
The problem is that the system isn’t built for this inconsistency. Employers and schools reward reliability: the ability to do the same thing consistently day in and day out. But for a lot of us, we just can’t do that, and the expectation that we “should be able to” is a huge pressure.
Ahhh, I have to cancel again, sorry…
I have spent years of my life carrying this HUGE guilt for saying “no” to invitations because of how other people perceive it. If you decline an invitation/s you’re suddenly:
-selfish
-rude
-self-centered
-not a “villager” (I’ve seen people talking about this on TikTok recently..)
-a bad friend/partner/parent/family member
-a flake
-you don’t try hard
-you dont care
…. and many more horrible names
For me, this is one of the most frustrating parts of having a fluctuating disability/s, and yet it’s one of the aspects least talked about.
The problem is it's a catch-22 you get caught in…
If I pre-plan to attend this invite, cancel other plans, prioritise my energy for this, dress nicely, do my makeup and hair, not talk about the reality of my life, and appear “normal” to others, then they don't believe me when I am struggling.
The alternative is not prioritising this invite, doing this and other daily activities, forcing myself to attend, unshowered, messy, dirty hair, in PJs and looking miserable because I feel awful and telling people about the reality of my life, then I get labelled as a “bore”, a “no fun” or “selfish”. It feels like you cannot win.
So many people don’t understand that a “simple” activity like going to a family member’s house for a cup of tea in the morning isn’t actually simple for many of us. Here are some of the factors at play:
I need to confirm what time I can attend
I need to figure out the timings of when I need to leave and do all the below activities
I need to get undressed
Have a rest break
Get in the shower
Wash my body
Wash my hair with shampoo
Condition my hair
Rise my hair
Have a rest break
Dry myself
Dry my hair (so exhausting!)
Have a rest break
Make food
Eat food
Have a rest break
I need to brush my hair
I need to put deodorant on
Do my makeup (lots of extra steps here)
Have a rest break
I need to brush my teeth
I need to choose clothes based on the setting & what I can tolerate today (hard!)
I need to put on the clothes
Have a rest break
Go to the toilet
Choose shoes
Put on shoes
Rehearse how I will speak, act and what I will say
Have a rest break
Figure out whether I need a jumper/coat etc
I need to pack my handbag with keys etc
Have a rest break
I need to make sure I cancel any plans for the rest of the day so I can recover
I need to travel to their house
Have a rest break
I may mask while I’m there (ND or pain etc)
I have to concentrate on not spilling my drink
I need to remember to smile and nod
I need to hold my posture in a “normal” position
I need to have topics of “acceptable” conversations to talk about
I have to think of responses to what they ask or tell me
I need to figure out how to end the conversation and leave
(and a bunch of other things in between)
Yes, for them this might not take much energy, but for me… each item takes a LOT of energy and planning!
The reality is that cancelling or declining an invite is not a character flaw. It is an often necessary act of self-preservation. My health MUST come first…
Being disbelieved & having to “prove” it
Something I find really painful is how the fact that you “functioned” better/good on a good day can be used as evidence against you on a bad one.
“But you managed it last week.” “You seemed absolutely fine at [event].” “Are you sure it’s that bad?” (cue unsolicited advice… “can’t you just X or try Y?”)
Yes. I am sure. Thanks.
So many of us who are neurodivergent, chronically ill, or both have become experts at appearing “okay”. We have had to spend years learning to move through the world in a way that doesn’t alarm others, doesn’t draw attention, doesn’t require explanation. The issue is that this masked performance is used as proof that we are fine, even when we are not. I have noticed that the better I have become at managing my disabilities, the less likely I have been to be believed when I feel my worst.
It costs a lot to wear this mask
Masking is something many neurodivergent adults know well; for example, suppressing our natural responses, mirroring others, and attempting to perform “neurotypically”.
When you layer masking on top of a fluctuating disability, the cost is increased, and now you are not just managing symptoms, you are also trying to simultaneously hide the symptoms, hide the managing of them, and hide the hiding… and of course, due to the high energy cost of all of this the mask slips every now-and-again, and many of us fear what others will think of this “secret” version of us. Will they dislike this version of me? Will they think I’m faking it? Will they abandon me?
What I want you to take from this
If you recognise yourself anywhere in these jumbly words, I want you to know a few things:
The variability in what you can do is not a personal failing
You do not owe anyone a consistent performance of wellness
You have to put your wellbeing first, that's not selfish, it’s vital
You are not alone; so many people know how hard all this is. Connect with us
If someone doesn’t accept you on both your good and bad days, you deserve better
You are not too much. You are not unreliable. You are not a flake. You are not lazy. You are not a bad friend. You are a person with a fluctuating disability, doing your best in a world that hasn’t quite caught up yet.
P.S I have built something new!
This March was the anniversary of three years of my practice, and I have been reflecting a lot on the gaps I see. One of the biggest is this: the people who need support the most are often the ones least able to access it in traditional formats.
Although I believe in the power of regular 1:1 OT appointments, I wanted to bridge the gap and create something for those people who can’t access them for any reason. Whether you are on my waiting list and ready to go, fixed regular appointments feel scary or impractical right now, or 1:1 sessions aren't financially viable yet.
So I’ve been building something new…
As of today, “Alex on Demand” launches!
I’m so excited to share this with you. This space will be a section of my website titled “on -demand webinars,” where neurodivergent adults (except US & Canada residents due to insurance) can watch low-cost on-demand educational webinars on the topics I support clients with most frequently.
All the webinars will be designed specifically for neurodivergent adults, created to be used in your own time, at your own pace, on your own terms. No appointments. No pressure. Just practical, neuroaffirming support available whenever you need it.
For the launch, I have created a 1x short FREE webinar for anyone who receives this newsletter, as a big thank you for following along. Simply head to this page:
And use this code to make the video completely free!: BDAYFREEBIE100
(This coupon expires. If you would like to access it after this email me for a new code)
As this is my first time launching something like this, please do let me know if you have difficulty accessing any of the site or webinar, and I will send you the video personally: Alex@NavigateNeurodiversityOT.com
Future webinars will include topics such as:
Workplace adjustments
Sensory modulation & profiles
Navigating autistic burnout
Nervous system regulation
Energy management for ND adults & chronic illnesses
& lots more!!
Please do comment or reply to this email with any topics you’d love to see!
©Alexandra Lawrence 2026, a neuroaffirming, lived-experience-based occupational therapist specialising in supporting Neurodivergent adults. This post was written from both lived and professional experience. Content is for general educational purposes only and is not medical advice.
Published: 1st May, 2026 | Updated: 1st May, 2026