“Ongoing health challenges* and tired of defining yourself and being defined by limitations? I’ll help you unearth the possibilities, rekindle HOPE, and stake your claim for a future worth loving and living.”
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.
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
“The single biggest problem in communication is the illusion that it has taken place.” George Bernard Shaw
Most (but not all) of us have the ability to speak. But we all know that words don’t tell the whole story – that sometimes when we respond to content without taking into account the tone and body language and context etc. – we can miss what’s actually being communicated.
There is a beautiful way to make clear what we really mean by doing a bit of collaborative and proactive spelunking with those who know us well to discover what we’re really saying with our actions.
For example, it’s important for people in my life to know that at anytime when I am cranky, it might mean my blood sugar is low, and to ask me if I’ve eaten recently.
There are 4 components here, which are:
Context – what is happening
Actions/Behaviors – what the person does or does not do
What a helpful response might be (as defined by the person)
Using your imagination, you can see that working up a chart with this information could be useful for most any relationship, but especially one where underlying physical/mental conditions have a bigger influence.
Fill in the blanks for yourself. Think about times when you’re being misunderstood and feeling poorly and just can’t seem to get the right reaction from others in your life. Like when you’ve just gotten back from work, or the store, and are complaining about what’s been happening – it might mean you just want to be heard, and the response you want is for someone to listen, not to probe or give advise.
Got it? My challenge is to ASK someone in your life about YOUR indirect communication, as THEY know better than you. Then, begin your chart – so you BOTH know what’s really being said. ~Z
That’s the simple version. And let’s trust that some of their “want” is coming from a good caring place.
Some of it may also be coming from a place of discomfort. You know how uncomfortable you can feel when someone else is suffering and you feel like there’s really nothing you can do about it? But you want to do something so you say some trite comment like “this too shall pass”, or “it’ll all be okay”, or “it is what it is”, or “it could be worse”… (okay, these are some of my pet peeves when I hear them – I’m sure you’ve got some of your own).
The point is that we say these things because we’re uncomfortable, and saying them reduces that distress – if only for a moment. Here’s the thing: you don’t have to respond, and you don’t have to let them in. Use your armor of reminding yourself their comment is about them, not you.
Another reason they don’t get it is that they just don’t get it! They can’t know what it’s like to be you, just like you can’t know what it’s like to be them.
In that vein, I ran into a brilliant metaphor to living with illness called The Spoon Theory. Maybe you already know about it, but if not, I highly recommend a read. And perhaps more importantly, this is a resource forfolks in your life who aren’t getting it. It may explain your life in a way you’ve not been able to. This story/theory articulates the phenomenon of our limited resources and the hard choices you have to make day in and day out. And there are thousands of “spoonies” out there! ~Z
Here’s what NOT to do… Don’t make a list of the things that make you “feel alive”. It’s too direct. Go at it from several angles.
To do that, search your memories and those of people who know you well. Have fun with this!
For you – let your self drift back in time to places and events when you;
Felt really creative
Really liked yourself completely – warts and all
Were proud of how you showed up in a challenging situation
Felt great about a service or help you provided
Believed in your sense of purpose
felt calm and connected and at peace with yourself and the world
had a blast!
Write those answers down. Keep the list alive for a few days so other things will surface.
For Interviews – ask at least 2 people for their memories of their experiences of when you were:
having a ball
a lot of fun to be around
full of joy and hope
the most naturally “yourself”
living your dream and expressing your natural gifts
In search of the bigger picture, also ask of yourself and others for when you were;
unhappy, depressed or miserable
just NO fun to be around
NOT liking yourself
anxious or generally troubled
NOT managing all the parts of your life well
mean or disrespectful to the people you love
This is a project. Proceed with caution.
Your answers will reveal themes. To discover them, for each answer, ask “why” 3 to 5 times. Ask “Why did that make me feel happy?” and when you get an answer keep asking. Same thing for the “unpleasant” stuff.
If you narrow things down, you’ll have a template from which to consciously choose “ALIVE”. And maybe even a foundation for a new vision for your future?
You all know that this chronic illness/pain/health issues deal is a BIG deal can feel like one big (or several little) rock on the path you thought you were on. Sure, there are obstacles on every path we take, but THIS can feel like all options are blocked.
So it’s time for a new path. But it’s not as if, when faced with that giant stone or fallen tree that other paths miraculously appear that you can go skipping down. Nope, the new path is both one you’ve not been able to see before, and one that has yet to be cleared.
So by definition, for you to reinvent your life and learn different ways to step confidently into a future you can love, you’ve got some brush to clear. You’ve got to clear this path. Not necessarily by yourself mind you, but bring the machete anyway.
It’s not about the death of your dreams, but it most certainly has something to do with clarifying them and considering alternative and creative ways of reaching them.
So take heart in the new obstacles your new path is presenting. It means you’ve stopped banging your head against the same rocks over and over again. It means you’ve chosen to trust yourself to adapt to your new normal, and to trust that you can handle the inevitable failures that will result from some of these experiments – and that failure is a type of success if you chose to learn from it.
Go hack something out of your way today so you can see more of where your path is heading by taking responsibility for clearing it! ~Z
If you’ve even grazed the surface of self-help or get-better literature or media, you’ve heard some version of “Positive thinking will bring you health and happiness”.
Maybe. But maybe not. Turns out there’s a catch: A study done in 2009 discovered that, for people who are already feeling good about themselves (i.e. high self-esteem) it does seem to help. But, for those of us with a more negative ongoing judgment about ourselves (i.e. low self-esteem), overly positive thoughts actually make us worse.
Why? If you say to yourself “I am 100% healthy”, or “I will cure my cancer by the end of the year” or any number of 100% absolute positive affirmations, the contradictions or possible obstacles to that statement may come flooding in, taking your mood and your hope in the opposite direction. It’s too unreal and unlike the truth you’re living right now.
In her book Chronic Resilience, Danae Horn speaks of “honest thinking”. Her conclusion of this phenomena is, “You can’t lie to yourself to feel better”. My understanding of good self esteem is a realistic appraisal of strengths and weaknesses, abilities and disabilities. Lying doesn’t seem to fit there, does it?
Life is not all good or all bad – your circumstances are not 100% positive or negative. So try out some aspirations that are doable and some self-talk that is honest. Tell yourself the truth and COMMIT to the next realistic goal or step – e.g. “I’ve been taking my meds and eating well, but not getting enough sleep. So, I will get more sleep tonight” or this week, or whatever… PICK ONE THING RIGHT NOW BEFORE READING FURTHER!
You can handle the truth. Your body already is anyway – might as well let your mind catch up… ~Z
“Honey, let it out. Be pissed if you’re pissed. Be scared if you are scared. Be Real. Pushing every negative emotion to the back burner means that those pots are still simmering“
This is from Danea Horn’s book Chronic Resilience. I don’t know that I’ve seen this important self awareness/management concept communicated so succinctly.
Allowing and honoring emotions is not the same as wallowing in them. Allowing emotions (which might look like naming them, acknowledging, and simply being with them) is frankly, being respectful to your inner self. And by doing this, we accept this part of ourselves, form a relationship with these emotions, and can go forward with the new information (and perspective) we otherwise would not have.
This is one skill helping you to go through versus going around (which is really another version of avoidance) whatever seems to be happening (or not happening) that seems to be thwarting your expectations and/or desires.
Simple but not easy. It will likely take practice to undo some habits of reacting. And that’s the problem of not telling yourself the truth about what you’re feeling – that sets the stage for saying or doing something that only later we reflect as “I wasn’t myself”. Yes, you were yourself – you were your scared and angry (less mature?) self in denial about what you were really feeling. And frankly, when we’re in that state, we don’t even have access to the more reasonable parts of who we ALSO are…
The next time emotion rings your bell, your choices can be to;
Only one of those choices will keep you moving forward AND moving in the direction you keep telling yourself you want to go – and keep your back burners from overflowing… ~Z
All of this self-help stuff is about learning to get through challenges, rather than making them vanish. And while everyone can count on more challenges of one sort or another, WE have the advantage of familiarity with what are challenges are about and how they are going to look and feel. We can anticipate our responses that hinder rather than help.
So start preparing now for the next gauntlet the universe is going to throw down.
Question: Are you aware of the unkind things you say to yourself, or are they happening under your radar?
Practice listening. Ask yourself whether you’d say these things to a good friend? Would a good friend nag you about all the ways you’ve messed up or how lazy or stupid you are? What would you do for a friend in your situation? I hope he or she would point out the things you can do rather than everything you’ve already messed up.
Dealing with ongoing health issues is a marathon that keeps on going. We need all the support and kindness and friendship we can get.
Challenge: Become increasingly aware of the actual words your unfriendly voice says to you during difficult times. Get the words for the judgments and criticisms and blaming and nagging. Ask what a good friend might be saying or doing instead. Ask yourself daily what you’d like from a friend and if you can, give yourself that.
You’re in this for the long haul. They call it that for a reason… ~Z
One way I think about this idea of resistance is that if I’m resisting (or denying) something that’s already occurred, I’m in essence pushing against a past I can’t change and thereby not facing forward to watch (and influence) where I’m going.
And yet, sometimes I’m outrageously persistent in my resistance of some realities. I have spent good chunks of my life reliving events, and reviewing how so-and-so shouldn’t have done whatever. If you’ve done this, you know that the more you mull it over or talk about it, the stronger the resistance gets.
I find it to be the same with illness and the various symptoms. The more I tell myself that “this isn’t fair and shouldn’t be happening to me”, or “I’ve been following all my care strategies and plans so I shouldn’t be having a relapse right now” etc., the less able I am to actually conjure up a mature response.
Because resistance is one way of getting lost in victimhood. And feeling like a victim is another way of saying we feel small. And when we feel small, we’re in essence saying that we’ve regressed to BEING small – i.e. being much younger. I don’t now about you, but my younger more immature self only rarely had any solid advice or wise counsel.
So as in Part I of this, throw your pity party if you must, and then try saying “yes” to what is already true and cannot be undone. Ask yourself once again, what’s the next first step. You know, not the second or the third step. The first step. Close in. The one you don’t want to take. ~Z