Category Archives: Setting Boundaries

Being Sick Without Being A Victim – Part I

I’d love to be able to offer you 5 or 9 or 3 steps to stand tall within yourself as a person with chronic illness and not be a victim. I would if I could. But it’d be a lie to make any kind of guarantees about this particular boat you may find yourself in.

What I will tell you is that learning to live and advocate for yourself from a place of strength and confidence – versus from that place of weakness, anger and victimhood – might very well be THE most important skill set to master.

Being a victim is like trying to get something to work with the power button turned off...
Being a victim is like trying to get something to work with the power button turned off…

Of course, there’s no need to learn how if all you want is others’ pity. Or if you want someone else to make the hard choices for you. Or you want to be rescued. Or if you’ve given up on having a loveable future and expressing yourself fully in the world.

Learning to speak up and out (literally or metaphorically) is a subtle but powerful act of discernment – a choice point if you will – that we will find ourselves in repeatedly. Where not speaking up for what you need or require is an act of cowardice. Where blaming others for not knowing what is important to you is simply a place to hide. Where speaking too loudly is an attack. Where how you speak about your needs or boundary or limits or whatever has been dishonored or is about to be – is just as important as what you communicate.

Because you are communicating for a reason. Because you have a message in the moment that you want someone else to actually GET versus just hearing the words come out of your mouth. Because only then will something change – at least for that moment. Perhaps also for moments to come…   ~Z


Sick? Ill? Disabled? How do you identify? Why does it matter?

Back when I worked professionally with people with developmental disabilities, we learned to say “people with… disability”, versus the unfortunately more common label of someone as “disabled”.

This distinction helped me discover that the idea of “disability” was a continuum, and that in some ways, the primary difference between me and “them” was that their disabilities were obvious. I could hide my “disabilities”. And even with my current conditions, most of the time I still can. Lucky me, right?

compromised vision is a disability we don't even think of as a disability anymore...
compromised vision is a disability we don’t even think of as a disability anymore…


But this begs the question around self-identification. We (with “invisible disabilities”) have the “luxury” of NOT thinking of ourselves as part of that group of people known as “disabled”. And I bet most of us choose that. Understandable choice, but there are costs!

One cost of choosing not to identify as part of the group of “disabled people” is to perpetuate the stigma society has towards those with obvious disabilities – the stigma that they are somehow “less than”. That’s bad enough. Perhaps a more malignant cost is that if we’re not “disabled”, then we must be “normal”. The cost of that belief is to continuously set ourselves up to try but fail to meet all those internal and external expectations about “normal”. Ouch…

So forget normal… Why not think of yourself simply as a person with a disability or disabilities – certain things you’re can’t do like you once could. Accepting that (with regular practice) sets the stage for adapting, and learning new ways to live and experience those things that matter the most (versus living a life of regret and bitterness).

Which reminds me of a quote…

I always wondered why somebody doesn’t do something about that. Then I realized I was somebody.” Lily Tomlin

You may be the only somebody to do something…   ~Z

Care-taking vs. Care-Giving: How we disempower ourselves and others – Part II

Care-taking is an act of aggression. If you’re not ready to swallow that, read Part I  again.

When I do something that appears to be FOR you but actually is for ME – is that not similar to passive aggression? Except it’s not passive, it’s active. Passive aggression is an indirect form of resistance or hostility – like being late or “forgetting” commitments. Care-taking is more nuanced and sophisticated than that – it is aggression disguised as “doing something nice”. It is doing someone a favor that they didn’t ask for (and still expecting gratitude). Isn’t that f**ked up?

A paradox of care-taking, is that when we care-take, we hurt ourselves as well as perpetrating on others whom we need for support: friends, family AND paid professionals and caregivers.

To be sure, there are also times when we DO need to be rescued...
To be sure, there are also times when we DO need to be rescued. But it’s still our choice…

It’s like this: If I don’t ask you for something I want or need – using the “story” that I’m protecting you as an excuse (because you are SO busy with other things more important than me…), I’ve done a disservice to both of us. Do you get how that might be care-taking? Because by NOT ASKING, I am avoiding MY possible discomfort of you saying “no” – or my discomfort of possibly causing you discomfort.

By the same token, if I let someone care-take me with their ideas of what I need, I’m giving up my power and frankly disrespecting them by pretending and withholding my truth.

Both cases – though examples of NOT doing something – (the more “active” type of ca-taking will be explored in Part III) – could be viewed through a lens of dysfunctional rescue – I’m rescuing you even though you may not need rescued. There’s nothing empowering about that – for anyone…

Care-taking is a lose/lose proposition. Nobody wins. Yet we tolerate it because it looks like everybody wins!

Sneaky little thing that…   ~Z

Care-taking vs. Care-giving: How we disempower ourselves and others – Part I

Have you experienced well-meaning people in your life doing something for you in the spirit of “helping out” or “caring” for you, but the impact wasn’t helpful or empowering? Maybe their “help” actually created new problems or left you feeling weaker?

To help unravel this curious phenomena, I’m going to write about from a first person perspective…

Here’s the deal: care-taking is a selfish, not a generous, act. When I “care-take” you,  I am actually putting my needs first.

Help is only helpful if it fits the actual need...
Help is only helpful if it fits the actual need…

Here are two forms care-taking often takes:
1) False Reassurance: I touch you and tell you “everything will work out in the end”, “It’ll be okay”, “This too shall pass” etc.
2) Forced Solution: I offer (or do) what I think I would want in your situation, e.g., I give you a hug, hold your hand, bring over lots of friends, leave you alone, turn up the heat etc.

There are other versions too, but what they ALL have in common is they are attempts to:
1) FIX your problem (WITHOUT asking you what you want).
2) Make ME feel better (less helpless or confused)

The impact of care-taking is to steal a little bit of power, independence – and perhaps self-respect – from the recipient of the “care”. Care-giving, on the other hand, leaves one feeling stronger and respected and more  empowered.

There’s more to it than this, but this is good starting point.

I’m not out to help you demonize those people in your life for whom you rely on for support. So the question to consider, is “Where are you care-taking others?”. Where are you NOT asking for what you want because you’ve already decided it’ll inconvenience or burden them (without checking in with them)?

More on Friday…    ~Z

“That doesn’t work for me”

“That doesn’t work for me.”

“I don’t do that.”

“That’s not a good idea for me”

Hopefully you’ve got a version or two of these phrases for yourself. If you don’t, get some words like this and load your chambers so you can fire off this simple boundary whenever you need it. And by “need” I mean your new need to protect the really important things in your life – the things that are indeed more important than the price you might have to pay if you were to say “yes” to whatever you’re saying “no” to.

And there’s another plus: When you have your own simple phrase of self-protection, you are stopping a flood of energy-sucking excuses (or lies) – OR long-winded explanations about how “I used to be able to do this or that but nowadays with my health… etc. etc.”, from drowning out truth and heartfelt connection with yourself and others.

Your boundaries are really YOU consciously deciding what gets through...
Your boundaries are really YOU consciously deciding what gets through…

It’s not easy. Keeping these flood waters out may require frequent sandbagging of leaks and breaches. But I think this can indeed be a situation where the “best offense is a good defense” as they say – yet another form of investment in a future worth loving. Yet another tool to help you  be at peace with your limitations and keep them out of the driver’s seat of your life.

There’s an honesty in saying “no” in a clean way without excuses or story. Try it out. Have a little faith that the people in your life will begin to respect you just a tad more when you say “That’s not gonna work for me”.   ~Z

So much “not knowing”, so little time…

You know those discussions about sugar, gluten, meat, dairy, this food, that supplement… where most everyone seems to “know” the rights and wrongs of particular things with certainty?

Here’s the thing: we don’t really “know” for sure about any of this stuff, we only know what we read. Okay, you also may know what your body tells you – say that you have an allergic reaction to peanuts. But I bet you wouldn’t know a histamine if it landed on your nose.

Are you a good bug? Or a bad bug?
Are you a good bug? Or a bad bug?

I “know” good sleep matters for my own wellbeing. But that doesn’t mean I know why. Hell, the scientists don’t even know why we need sleep! And some days I get plenty and still feel like crap. Other days on less sleep I feel fine. So I “know” about sleep but not completely. Not 100%.

The same goes for your diagnosis and your symptoms. Even if you get a clear diagnosis (e.g. MS, fibromyalgia, cancer), that also opens the doors to more “not knowing”. We can’t completely understand the biology in terms of cells, and fluids and neurotransmitters and blood levels and all that stuff. At best, most of them are singular indicators of a situation that’s WAY too complex (and ever-changing) to grok.

My point is this: Don’t get lost in trying to know. Don’t substitute “trying to know” for actually DOING something. Keep searching if you want. And, do something right now that you KNOW to be good for you. Take your meds. Eat your veggies. Walk your dog. Get to bed! Let something go!

Self-care is fundamentally about faith in your efforts and taking the long view (because some of the things that help us heal and grow aren’t the most pleasant or comfortable things).

And keep experimenting because… you never know…     ~Z

Can you create boundaries without blame? Part II

Protect what matters. No explanation required!
Protect what matters. No explanation required!

In the last post I wrote, “We barely know how to take care of ourselves so why should we expect others to get it?”.

And I certainly don’t mean to trivialize the difficulty of setting boundaries, or of saying “no”. It may be the right thing to do for you and your health, but doing so can have an impact on your relationships that is uncomfortable, unpleasant or just plain nasty. Saying “no” to people tends not to bring out their best. But that’s not your problem!

But here’s the deal: anything other than standing up for yourself and what you know to be true for you in the moment is CHOOSING to be a victim, and living from a place of weakness, not personal power. And we need all the personal power we can muster to reinvent a lifestyle that works, in spite of our ongoing physical and/or mental challenges.

Each time you “go along” with somebody for the sake of keeping the peace/friendship/job etc., you lose a little bit of your “self”, and it gets replaced by somebody else’s version of who you are (or who they think you ought to be). The more you inhabit the ambiguity of who you are and not knowing or believing in what matters to you enough to stand your ground… the less you’ll be able to make (and live with) the hard choices that enable you to live the life you deserve. This is one of the big blessing/curse factors of being chronically ill.

You know what? If you need to (at least mentally) blame someone else to start setting some good boundaries, do it for now. Because a poorly set boundary is better than no boundary at all!

And trust that there’s a better way and a big emotional payoff for learning how NOT to make others wrong to be right! ~Z


Can you create boundaries without blame? Part I

Most of the time, when we set a boundary to protect what matters to us (values, health, lifestyle, integrity, privacy etc.), there is an impact on others. Because of course, THEY are who the boundary is keeping out.

Setting healthy boundaries with minimal emotion helps us accept and embrace limitations in a healthy way - which keeps us progressing...
Setting healthy boundaries with minimal emotion helps us accept and embrace limitations in a healthy way – which keeps us progressing…

The tendency can be (okay, MY tendency can be…), to try to apply reason and logic to the situation. That occurs when I’m trying to convince the other person of the “rightness” of my choice (e.g. I need be home by 10 so I get enough sleep etc.) and get them to agree with me. It’s a little like “I’ll set this boundary with you right here if that’s okay with you”. Hopefully you see the problem here?

A further extension of logic and reason – independent of whether you’re convincing the other – is to make them wrong, as in “I didn’t get enough sleep because you kept us out too late”. Or worse, “you’re obviously an idiot if you don’t understand me and my needs”. We barely know how to take care of ourselves so why should we expect others to get it?

At it’s simplest, boundary setting is about what’s right for me in terms of the best way to take care of myself. Nobody has to agree or get it (though an explanation seems respectful). Nobody else has to be wrong. It is saying some version of “if you do this, I’ll do that” or, “in these circumstances, I’m going to do this”.

Consider this quote:

Boundaries… should be firm enough to keep our values and priorities clear, open enough to communicate our priorities to the right people, yet closed enough to withstand assault from the thoughtless and mean”.   Anne Katherine, author of Boundaries: Where You End and I Begin

Setting boundaries maturely without blame takes considerable intention and practice. Can you get better at it? When? How? ~Z

Part II

Do you say YES when you mean NO?

yes NO maybeWhether implicitly or explicitly, people in our lives are often asking us for something. Then, following some internal social protocol (that perhaps we’ve come to believe is a rule), we respond “appropriately”. Maybe your version of appropriate is not to offend the other person, or keep them happy, or to make them like you. One habitual way we do that (in the short term at least) is by saying “yes” when we mean “no”. Too often, none of those justifications of appropriateness serve your best interests. Either you’ve committed to something you know you’re not likely to do (and damaged trust in the relationship), or you’ve committed to something that is NOT consistent with your priorities and values in your current reality.

For those of us learning to live with a chronic illness or disability, saying “yes” when meaning “no” is likely a “before we got sick” habit we can no longer afford. But now, we just don’t have as much headroom for casually doing “extra” things.

So when you say “yes” and mean “no”, are you saving face at the expense of something you KNOW is important? Like your wellbeing, or your higher priorities of recovering and prevailing over your new limitations? Like reinventing a new normal with hope and faith for your new future?

I’ve let a lot of people down by saying “yes” when I meant “no” or “maybe”. I’ve made myself sick countless times by doing something that I knew was not in my best interests but pretending like the side-effects weren’t going to get me “this time”. When you do that, that is YOU getting in your own way.

Try this: Say YES ONLY when you mean yes, NO when you mean no and MAYBE when you mean maybe. It’s a practice. And it will get easier. And you’ll thank yourself for it…     ~Z

Who’s Sucking The Life Out Of You – Part II

down the drain...
Do some folks leave you feeling like this? You can’t use the water once it’s down the drain…

In Part I, I invited you grow your confidence, power and freedom by finding relationships that are more drain than gain, and making a yes-or-no decision to act – putting YOU first by ending or strictly limiting a relationship.

Maybe you’re feeling some resistance (another word for fear, by the way) to making this commitment? Some of that might be related to whether you contain the skills required to cut somebody off in a good way. It’s not something we practice regularly.

And, there’s a more subtle type of resistance that might feel like guilt over “blaming” the other person for your suffering. You might be tempted to turn that guilt into demonizing the other and making him or her “wrong”.

But here’s the deal: They don’t have to be wrong for you to be right! You are the only one who knows your priorities and how you want to distribute your precious time and energy. You don’t have to explain, and you certainly don’t have to apologize. You are making the hard choices in your life – in line with your commitment to build a life that matters in spite of your illness – and some of those impact others in ways they don’t like or don’t agree with. Some folks will get it. Many will not.

And it’s not your responsibility to make them agree or understand or feel okay about your decision.

Can you prepare for their push-back and stick to your commitment?

Can you feel the power and confidence about to arise in you after you’ve staked yet another claim on living a life in integrity with what you really matters to your future?    ~Z