For most of my life, I really thought I understood boundaries.

To me, having good boundaries meant not allowing people to take advantage of my good nature. But I'm beginning to realise that even my understanding of being "helpful" was more complicated than I thought.

Growing up, I had this need to be seen as helpful, and that clearly continued into adulthood.

Being useful - doing things for people, solving problems, stepping in, physically helping, rearranging my life to accommodate someone else's needs - had somehow become tangled up with my sense of self-worth. Being capable and helpful made me feel valuable.

I understood boundaries as something that protected me from people who might take advantage of that willingness to help, but I didn't apply those same boundaries to my family in fact I don’t think I applied them to anyone at all really.

And I certainly didn't think to apply them to myself.

Since my AuDHD diagnosis and, particularly, during this latest period of autistic burnout, I have been thinking and learning a lot about capacity. I'm starting to understand that boundaries and capacity are far more intertwined than I ever realised.

The hidden cost of being capable

I've spent my life being seen as a highly capable person.

I'm intelligent, determined, energetic, resourceful and usually able to find a solution to a problem. I've raised a family, run businesses, studied, taught, created, travelled, helped people and followed more interests than I could possibly list here.

I've fitted a lot into this lifetime.

But what other people haven't necessarily seen is what it has taken for me to appear that capable.

The truth is that I have been running over capacity for much of my life.

Before I understood my neurodivergence, I didn't realise just how much energy I was using to function in ways that seemed to come naturally to other people. I thought I simply needed to try harder, organise myself better, be better, push through and get on with it.

And I became very good at the pushing through bit.

When someone asked something of me, quite often my first internal response was and is - dread.

Some part of me already knows what saying yes is going to cost.

But instead of listening to that feeling, in the past, I would start looking for a solution. How could I fit it in? What could I rearrange? How could I make it work?

I felt responsible. I worried about disappointing people.

Quite often, it didn't even occur to me that I could simply say no.

Time and capacity aren't the same thing

Another thing I'm only beginning to understand is that having time for something and having the capacity for it are two entirely different things.

For most of my life, I looked at the space in my diary. If there was room to fit something in, then surely I could do it. I became very good at rearranging things and finding ways to make everything work.

What I rarely considered was what doing that thing would actually cost me.

I'm realising now, that capacity includes so much more than the hours something takes. There is physical energy, executive function, emotional bandwidth, sensory tolerance and social energy.

And then there is something I almost never allowed for in the past - recovery.

An appointment or event might only take an hour, but that doesn't mean it only costs me an hour. There is preparing for it, deciding what to wear, changing mental gears, travelling, interacting with people and then coming home and trying to change gears again. Sometimes that one appointment can effectively take my whole day.

Other things have surprisingly high costs too. Cooking isn't simply the time it takes to prepare a meal. For me, there are decisions to make, planning and timing to work out, and the stress of doing something I don't particularly enjoy or feel confident doing.

Then there are environments that draw on my capacity in completely different ways. A busy restaurant, supermarket, or expo can mean people, conversations, movement, noise, smells, tastes and other sensory information all arriving at once. I'm not simply spending an hour or two somewhere; my brain is processing everything around me at the same time. The sensory and social overload can leave me exhausted long after I've come home.

Driving longer distances on my own is another example. I have an underlying fear of driving long distances (meaning longer than half an hour) and managing that fear while concentrating on the road can use a significant amount of my capacity before I've even considered whatever I'm travelling there to do. It can begin days in advance.  Mostly, driving is unavoidable and I do it, but I'm learning that I also need to acknowledge the cost rather than pretending it shouldn't affect me.

And yet paradoxically, I can spend an entire day running my own stall at an expo and cope surprisingly well. I suspect part of the difference is that I know why I'm there. I have a role, a purpose and something specific to focus on. I'm not trying to process everything around me in quite the same way.

So  what I'm beginning to understand is that I can't measure my capacity by looking at a clock.

Something that takes one hour may cost me significantly more than something that takes six.

The question I'm slowly learning to ask isn't, "Do I have time for this?"

It's "Do I have the capacity for this - including what it will take from me afterwards?"

Learning to listen to the dread

For a long time, when somebody asked something of me, I would feel an immediate sense of dread. I often still do.

And almost as quickly, I would judge myself for feeling it.

"Don't be stupid. Don't be silly. Don't be selfish. What are you so afraid of?"

I didn't understand what that feeling was telling me. I interpreted it as something I needed to overcome - another thing to push through.

Now I'm beginning to understand that sometimes the dread isn't fear of doing the thing at all. It's the knowledge of what doing it is going to take from me.

Some part of me already knows this.

It knows about the overwhelm and the overload. It knows how much energy I'll use preparing myself, doing what is being asked and holding myself together through it. It knows about the recovery time afterwards. And it knows there is always the possibility that pushing beyond my capacity will trigger a flare of my ME/CFS or fibromyalgia.

The dread can arrive before I've consciously worked any of that out.

Before I understood my neurodivergence, I didn't know why things that seemed relatively straightforward for other people could cost me so much. I assumed I should be able to cope in the same way they did. If I couldn't, the problem must somehow be me.

I'm learning that it isn't a question of fault.

My brain and body process the world differently, and that has an energy cost. That feeling I've spent so many years criticising myself for may actually be my body trying to communicate with me.

In the past, instead of listening to it, I would immediately begin problem-solving.

"How can I talk myself through this? How can I fit this in? What can I do to ease the fear? How can I make it work?"

I would feel responsible. I would worry about disappointing someone. And often it didn't even occur to me that saying no was an option.

I'm beginning to see that feeling differently now.

I don't have to automatically push it away, nor do I have to obey it without question. I can stop and become curious about what it is telling me.

Sometimes it is simply my system saying:

"I know what this is going to cost us, and right now we don't have enough to give."

When my body created the boundary for me

I have also lived with ME/CFS and fibromyalgia for much of my adult life, and I'm seeing those experiences differently now too.

My first major burnout and subsequent collapse with ME/CFS, happened when I was eighteen.

Looking back, I can see how often my body has tried to slow me down since then.

When I have exceeded my capacity, eventually my body has made the decision for me.

The pain increased. The exhaustion took over. My brain stopped functioning properly. I would reach the point where I physically couldn't continue.

And even then, I often tried to push through.

During this current burnout, exceeding my capacity can send my entire system into overwhelm. Everything speeds up. I become jittery and teary. Meltdowns increase.  My executive function disappears. My body goes into fight or flight and eventually I am completely exhausted. BUT whereas in the past I would have kept going until I shut down, collapsed and become physically incapable of continuing, I'm trying not to get to that point.  I have put boundaries in place.

“I don't have the capacity”

I'm practising saying something that is both very simple and surprisingly difficult:

"I don't have the capacity."

And then stopping there.

Not immediately looking for another solution.

Not rearranging everything.

Not giving a lengthy explanation about why I can't do it.

There is relief in that.

There is guilt too.

It is particularly difficult with family. Part of me still worries that people will think I'm selfish, boring, too old or just simply no fun.

And some of that guilt has very old roots.

I can still hear the voice of my son as a child saying disappointedly, "You are always sick, Mum." 

That was around thirty years ago, but it still hits me.

I remember the guilt and shame I felt hearing those words. I didn't want my children to have a mother who was always sick. I didn't want my limitations to affect them. So even when my body was struggling, there was another reason to keep pushing through.

At that stage I did know about my ADHD and I couldn't change the fact that I had ME/CFS and fibromyalgia, but somewhere along the way I think I learned to feel guilty for what they prevented me from doing.

Perhaps that is part of what I'm learning now. Having a limit doesn't make me selfish. Saying that I don't have the capacity doesn't mean that I don't care.

It means I'm finally acknowledging a limit before my body has to enforce it for me.

And I am learning to set boundaries with myself as well. AuDHD can make this complicated.

My ADHD brain/body can become excited about an idea and enthusiastically volunteer my Autistic brain and body for something they simply don't have the capacity to deliver.

I still catch myself thinking, "I'll just do one more thing."

Sometimes the boundary I need most is simply:

Enough for today.

My work deserves a boundary too

This has possibly been the most surprising realisation.

I've always been willing to rearrange my own work around other people's lives.

Because my work is creative and doesn't necessarily bring in a constant large income, somewhere along the way I absorbed the idea that other people's work was more important than mine. And felt resentful for it.

If somebody needed something and I was painting, making journals, writing, working on my website or developing a workshop, I rarely thought I could say:

"Sorry, I'm working."

I would put aside my work instead to accommodate the needs of other people.

I'm not doing that anymore. My work hours matter.

The fact that I love my work doesn't make it less valuable. The amount of money I earn from a particular hour doesn't determine whether that hour deserves protecting.

My creative time is precious.

And, I've realised, so is my recovery time.

The life I'm protecting

Perhaps this is the biggest change in how I understand boundaries.

I used to think boundaries were primarily about keeping something out. Now I'm beginning to see them as a way of protecting what matters to me.

I'm protecting time with my husband, my children and my grandchildren.

I'm protecting my creativity and the work that gives me pleasure.

I'm protecting the recovery time that allows me to do those things.

And I'm protecting the quiet country life I love - being at home, working in my studio, spending time in nature and having some distance from the noise and troubles of the world outside.

I'm also beginning to understand that I have a right to want this life.

For a long time, my sense of worth was tangled up with being capable, useful and available. Setting boundaries can still feel selfish because I'm choosing where I want to spend my time and energy rather than automatically giving them to whoever asks.

But perhaps that's the point.

I'm not setting boundaries because I no longer care about other people.

I'm setting them because I care about the life I have.

The highly capable Jane is still here.

She simply doesn't have to be available to everyone all of the time.

My late AuDHD diagnosis has put so much of my life into perspective. I can see now how much energy I spent trying to fit in and be like everybody else, without understanding that my brain and body simply don't work in the same way.

I don't regret the life I've lived. And I no longer grieve what could have been. I've done, learned and experienced an extraordinary amount.  Perhaps "pushing through" was part of how I made much of that possible. 

But I don't need or want to live that way anymore.

I feel as though I've completed whatever mission I may have been put on this earth to achieve. I've spent much of my life helping others learn and understand things that, strangely enough, I'm only now beginning to understand about myself.

And now, later in life, this time feels like mine.

I'm learning what it means to simply be me. I'm not sure I've ever really done that before. I've spent so much of my life and energy trying to be someone I thought I needed to be.

Boundaries are becoming part of giving myself permission to live differently.

I'm still learning. I still feel guilty sometimes when I say no. I still have moments when stopping and resting feels selfish, even though another part of me feels enormous relief when I listen to what my body is telling me.

But I keep coming back to something I wish I'd understood much earlier:

Capacity isn't a measure of capability or worth.

I can be intelligent, capable, creative, loving and supportive and still not have the capacity for something.

I can say no and still care.

I can rest without having to earn it.

And I can protect time for the people, work and quiet life that matter to me.

I've spent much of my life teaching other people that they need to look after themselves first.

Perhaps one of the unexpected gifts of burnout is finally understanding that those words were meant for me too.