Understanding Chronic Illness: What is the Spoon Theory & Why is it Important?

The Spoon Theory is a tool for understanding chronic illness and communicating our experiences with others, and it has important implications for coping and support. It connects us with others who …

Source: Understanding Chronic Illness: What is the Spoon Theory & Why is it Important?

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Clouds

My head is full of clouds.

 

But these clouds aren’t light and fluffy:

There’s have a weight to them.

They’re dark, beyond ominous —

tell of impending doom, as it were;

They’re oily. Infectious. Bitter.

 

An imminent storm, yet never breaking.

The built up pressure is just too much,

and I wish it would burst

and the storm rage,

just to feel something

different, feel alive…

 

Have you ever heard a cloud laugh?

“It’s an innocent joy–

it feels like sunbeams!”

 

The clouds in my head don’t laugh like that.

They mock. Scorn. Tear flesh.

 

So I cower and close my eyes–

because how do I fight a cloud? —

and hope(less) the next time I look,

the storm will have passed on.

Dealing with Toxic Family Members

My life is pretty tumultuous right now.  Over a month ago, I reached out for support to my family because of my poor mental health– this is the first time I’ve ever done that, and I am incredibly grateful to see how positive the response has been.  I was spurred to this in a panicked response to learning my roommate wanted me to move out because I was too depressed (this may or may not be the entire story, but it’s my remaining impression).

I have been struggling with my mental health for my entire adult life, symptoms beginning in highschool and officially diagnosed after my first year of university.  My family dynamic is not sunshine and rainbows, and it was immensely difficult for me to ask a member (one member of my immediate family, my father) for help.  While I don’t regret this in the least, along with my asking for help my delicate emotional state became topic for conversation among my immediate family members and close relations.  Most of these people have no education or frame of reference on how to approach a discussion about mental health, and don’t recognize that as a potential issue in their support.

Some of the closest relationships in our lives can be the most toxic– just because someone loves you doesn’t mean you have a healthy relationship.  In my case, I’m referring to my mother-daughter relationship.

With my siblings being informed, inevitably my mother became aware of situation as well (side note: my parents have been separated for ten plus years).  She Skyped me, asking to come visit.  I said no, that it was too much for me to handle right now, but thank you very much for your concern.  I mentioned to my cousin that communication with my mother is a huge stressor and trigger for poor mental health patterns.  It was communicated to my mother (probably by my father) to give me some space while I try to work things out.  I don’t know how that was communicated– what language was used, or what exactly was asked of her– but I know it was done.  I haven’t heard from her since then.

This was about six weeks ago.  I moved into a new place six days ago.  Four days ago, I gave my sister my new address so she could send me something (art therapy colouring books from Amazon!).  Three days ago, I answered a knock at my door and found my mother on the doorstep and her boyfriend sitting in his van in the driveway.  I had not given her my address, nor received any notice or indication of her intent to visit.  If I had, I would have politely asked her not to come.

I stood in shock, and then asked her a series of questions about how and why she was there.  She wanted to go out for coffee, wanted to see my new place, wanted to see how I was.  All seemingly innocent, motherly things.  I, however, wanted her to leave immediately.  I didn’t invite her in, saying that I would go get changed and we could go out for coffee or whatever.  While in my room, I started madly texting my cousin and freaking out.  She told me to tell my mom to leave.  I wasn’t capable of that.  She asked if she could call so that SHE could explain things to my mom and ask her to leave.  I wasn’t capable of that either– couldn’t imagine standing by while that conversation happened and then having to deal with the fallout.  By this point I was having a panic attack and basically in tears.  I said the easiest thing for me to do would be to give my mom what she wanted and go out for coffee with her.  Doing so would be the smoothest path to see her gone as soon as possible, with fewest opportunities for confrontation and emotional attacks.  I wish I had the strength to tell her to leave, but I was too emotionally and mentally fragile; saying anything of the sort would bring on a barrage of questions and hurt feelings that I did not have the ability to meet.  She’d make a scene: I definitely couldn’t handle that.

We go out for coffee.  I barely say two words.  She hands me money– disgustingly, I’m too poor to refuse it.  “Are you trying to buy me off?” She looks uncomfortable.  I spend the entire time trying not to let tears roll down my face.  “Did you just want to sit here for a while?” “Actually, I’d like to go back, if you’re ready.” We get home. “Can I give you a hug?” I shake my head no, and turn around and go inside.  I sort of flail around for ten minutes, freaking out and unable to settle.  I notice my roommates are in the backyard, and instead of immediately isolating myself, I gather my strength and go outside.  “My mom just showed up,” tears brimming.  They listen while I bawl.  I tear up now, even, remembering.

I am conflicted with guilt because I know my mom means well, she is just completely oblivious to my reality.  I don’t know what to attribute that to specifically, it likely being a combination of factors.  Engaging her in conversation is useless.  It turns into a mud-slinging competition– which I will always lose because responding to hurtful, unfair and emotionally manipulative accusations in kind is not the person I am or want to be– plus, I’m just not brave enough to speak to her that way.  I may not reciprocate, but everything she says is still extremely painful and emotionally laden, and I am not in a place where I can remain unaffected.  I so badly want to be, but instead am instantaneously reduced to that small, powerless child, wanting to hide and lick my wounds.  To engage would only worsen the onslaught, and I can’t even handle the initial attack!  I have always said it’s like trying to talk to a child, or a thirteen-year-old girl– though, I was more emotionally mature at thirteen than my mother has ever been.  I don’t harbour any hope that I will ever be able to have a conversation like this with her.  She will always interpret what I say as an unjust personal attack.  Whatever I say goes in one ear and out the other.  Even if I was in a place where I wanted to have that conversation, she does not know how to hear it.  She does not know how to listen or allow for the agency of another person.

I am angry and frustrated– I feel powerless and detest feeling that way.  I don’t know what to do.  I don’t know how to handle it.  I initially responded by speaking with my sister and my cousin, separately.  My cousin and her mom, my paternal aunt, get it and sympathize with my anger.  After speaking with my mom– without my support– my sister returned with a massive guilt trip.  That’s basically what I anticipated, but it doesn’t make hearing it any easier.  Now I feel uncomfortable speaking and being vulnerable with her, because it only highlights for me how ignorant she is about what I’m dealing with– she doesn’t understand what I’m going through or how damaging words can be.  To her, they’re just words, she’s always your mom, and you just need to talk about it.  She didn’t experience the same things I did as a child because I protected and insulated her; I took on that role, and now I’m left with my invisible scars and bewildered expressions of the people I cared for.  My dad is away for another week, but after speaking with him yesterday I am pessimistic about his being able to stand up to my mom for me.  He doesn’t grasp how damaging the experience was, and he’s usually of the “respect your parents” mindset.

It is not commonplace to stand up to my mom.  It’s largely seen as an exercise in futility.  I spoke with my counsellor about this yesterday.  I said I wanted my aunt to speak to her, because I thought she would respect what she said even if she didn’t understand or agree.  My counsellor thinks it should come from me.  I can understand why, but it’s scary to think of that exchange, even if I can appreciate why it seems the best course of action.  I could send her a letter, clearly outlining my boundaries and asking for her respect and patience while I work through some things.  I already anticipate a backlash, but if I did this at least I could be sure of what exactly was said, what was asked, and know for a fact that my request is being disrespected if/when it is violated in the future.  It is not impossible that it wasn’t made clear to her to begin with (although I doubt this to be the case).

I feel like everytime I vocalize how difficult this mother-daughter relationship is, I immediately feel guilty and ashamed.  Part of this comes from me, and a significant amount of this comes from other members of my immediate family.  “She’s your mom. She loves you.”  Yes, thank you. <rolls eyes>  I love my mom.  I know she cares.  That does not mean that I am not allowed to create boundaries for my own safety.  I am a firm believer in questioning exactly that which you are told not to question.  Ignorance is not always bliss.  Creating an illusion of familial harmony does not help anyone, especially me– it only makes other people more comfortable: BUT THEN I’M STILL UNCOMFORTABLE.  I am dealing with the fallout of childhood trauma every day, and if I don’t look at that I will never be able to begin a path of healing.  There are many contributing factors to mental health issues, yes, but for me personally, my anxiety issues largely stem from my relationship with my mother and those years immediately after my father moved out (ages 10-15 or thereabouts).  Too much responsibility was thrust upon me at too young an age, and the environment within which this occurred was mentally and emotionally abusive.  I have significant self esteem issues.  I go to therapy or counselling or whatever, and 9/10 I’m speaking about my mom.  I am angry I feel pressure to silence myself from some family members.  I am frustrated with my life and the extent to which the state of my mental health influences it.  I hate feeling like a victim of my emotions, and I want to take control.  I am so much more than my mental health illness, but to gain control I have to heal, and to heal I have to look at what hurts.  I desperately want to begin a path of recovery.  One day I want to be able to breathe a full healing breath, with my body covered in healed scars, and feel empowered by my truth instead of suffocated by other peoples judgements and opinions.  This is my life, not theirs.  My non-anxious/depressed self is an anti-oppressive badass and stands up for what she believes in.  I want so badly to be able to transfer some of that strength and resilience to the vulnerable child-like persona trying to deal with her trauma amidst a society’s heavily stigmatized perception of mental illness.

Have any of you had experiences successfully (or not so successfully) dealing with toxic family members?  Have you any advice?  I don’t want to cut my mom out of my life; I don’t think that would be particularly effective or helpful.  I just want space to heal, and I think I deserve the respect to do so without being pressured to succumb to whatever makes people most comfortable.  How do you establish boundaries with someone that refuses to understand their purpose and respect them?

Struggling with Help from Family and Friends

I suffer with depression and anxiety, and it severely impedes my quality of life and ability to care for myself day to day.  This is my first post on my new blog, but more on me and my vision later; for now, I’m trying to get the ball rolling without obsessing over the details (not one of my strengths).

My father called me a few days ago to discuss a ride I needed to a doctor’s appointment the next day.  He approached this by saying, “You can get there by yourself, right?” …… and I had to say: “No.”  Partially, this is because I appreciate the transportation.  More than that, though, I need someone to come and get me to ensure I actually go.  I need a babysitter.  My cousin and he have been trading off a weekly visit for the past month to ensure I show up to appointments.

Two issues come into play here (or at least two, anyway): 1. the struggle to be brave enough to ask for help in the first place, and 2. the difficulties I have with accepting imperfect help from well-intentioned folks.

I have always struggled with leaning on people when I need their help, and have only done so with great reluctance and discomfort.  I’m embarrassed to admit I need help; I feel like a failure I wasn’t strong enough to manage things on my own.  I realize it’s misguided to think I should be able to handle everything by myself, but misguided feelings are the nature of the animal, I suppose.  Needing help because of mental health issues compounds the shame I already feel about having to ask in the first place.  As it is a less tangible thing than a physical disAbility or injury, it’s relative credibility is often questioned.  I have extensive lived experiences that prove how debilitating it is, and yet societal stigma and my own insecurities are not enough to convince me of their validity.  I try to be open about my ongoing battle with poor mental health, but I am still uncomfortable to admit how immense the influence it has on my life to the people I love most.

I may be my own worst critic (critic seems too complacent a term), but I am inevitably plagued by imagining my friends and family believe these things too.

There are a number of deterrents that keep me from asking for help from loved ones.  The biggest one, encompassing a myriad of disillusioned and irrational thoughts, is my habit of assuming responsibility for the self-care of others.  Other significant deterrents include my wanting to avoid potential triggers and my reluctance to interact with people that I believe don’t understand what I’m going through.  Let’s address these in reverse order.

I know I have friends and family that care about me, but I only consider approaching those that I feel most comfortable being vulnerable with.  To even ask for help in the first place makes me feel vulnerable.  I hate feeling vulnerable and I resent that I’ve been made to feel that way.  It’s made all the more difficult when I feel like the people I’m going to for help don’t understand what I’m going through.  I don’t understand what it’s like to not live with a significant mental health issue, so I can’t imagine what it’s like to be approached by someone who (reductively and self-deprecatingly) is simply “thinking the wrong way.”  How do you try to support someone when their every fear and worry doesn’t make sense to you?  I already feel like what I think and how I feel is going to be minimized and I’ll be infantilized before we’ve even spoken!  It’s embarrassing to ask for help to do things I am physically capable of doing, but not able to mentally motivate myself to do.  I feel pathetic that, as an adult, I need a babysitter or minder to do simple things.  It’s even more difficult to approach my more socioeconomically privileged friends because it seems they can relate even less, and then I feel like a black stain on the beautiful landscape that is their life.  I am aware as I type this that it’s complete rubbish, but it is genuinely how I feel.

While I’ve been busy isolating myself and denying the existence of the rest of the world, I’ve been able to monitor and reduce or become comfortable ignoring the things that trigger my anxiety and depression.  As soon as I reach out, I’ve seemingly lost that element of control.  I’ll eventually have to leave the comfortable obliviousness of my bed and face the harsh reality of a busy and infinite world that has been successfully progressing forward day to day while I remained stagnant and unchanging.  The more depressed I am, the more difficult it is to face this completely ordinary world.  More than that, though, I dread having to speak with people– including and especially the person I voluntarily reached out to and who has now successfully helped me to leave my house out of the goodness of their heart.  Having to interact with this person means I’m forced to address and articulate the very same things that I have been quite busy working to avoid at home.  The person helping me might not be aware of my triggers, and it brings to question whether or not it’s reasonable to expect them to.  Inevitably, there will be questions and comments:

“How are you doing?” Not well, obviously.  How deep into my twisted mind would you like me to act as your tour guide?  Usually there’s just a nod at it’s existence. It’s not a popular holiday spot.  Clearly, I’m desperate enough to call you.  What further proof of misery do you need?  Why are you voluntarily asking for me to horrify with the reality of my existence? “What has changed since we last spoke?  What’s new with you?” Absolutely nothing.  Everything in my life is the exact same steaming pile of shit and I spend all my time hating myself for it.  Thanks for making me feel worse about having to admit how much my life isn’t progressing, or even going backwards.  “When was the last time you ate?”  “Why did you decide to stop taking medication?”  “Why didn’t you answer my phone calls?”  “Why didn’t you go to your appointment?”  “What happened with things x, y, and z?”  “Why don’t you just do obvious solutions 1, 2 and 3?”

Even their well-meaning attempts to help where they can make me feel like shit:

“Let me pay for this.” Yes, because I’m not already humiliated enough that I’m so crazy I can’t hold a job and pay for things like you can.  “Let me take you out for dinner.”  This is likely the first time I’ve eaten in the past few days.  Now I feel guilty that you have to notice things like this, grateful I’m about to eat, and resentful you can afford to treat me and have the mental capacity to keep track of things like eating regularly.  “I can’t wait for event x, y, and z!”  Well, I hope you have a great time, because I will likely be at home in bed obsessively watching scifi tv shows and failing at having a social life and showing up to important family functions.

I am completely aware that I am lucky to have friends and family that want to help me.  I am very grateful for them.  Simultaneously, I am ever-presently exisitng in an intense and volatile emotional state that causes me to instinctively react defensively to every single thing I feel attacks or questions my existence as someone with debilitating mental health issues, regardless of the intent beyond the trigger.

Lastly, I obsess over whether or not the people I instinctively and initially turn to for help have that capacity.  Societal norms are such that when someone asks for help, we reply with a smile and an “Of course!” — at least that’s what I expect among friends and family.  I am terrified of people giving this response when they don’t actually have the capacity to help, whether it be because they are not self aware enough to realize it, because they feel obligated to help for whatever reason, or otherwise.  Maybe I just don’t trust people to know themselves or to offer their help for the right reasons– reasons that would be acceptable to me, anyways.

This is me taking on the responsibility for someone else’s self-care.  It is likely one of, if not the biggest thing I struggle with; it’s so ingrained in my nature I don’t usually recognize I’m doing it.  It is more instinctive for me to take care of other people than myself.  I’ve taken a step back from offering my help over the past few years because I know I haven’t had the capacity to do so, but it’s still an immediate thought process.  If I can’t help other people, I’m left with helping myself.  I don’t know how to do that properly.  Look at my life if you want proof that I can’t do it well!

In conclusion, if I am brave enough to ask for help, I often find myself accepting imperfect help. I’m not sure how to feel about that.  Is it the loss of control on my part that makes this so difficult?

Perfectionism is something I obsessively expect from myself, and has been a strong enough negative influence to completely thwart many opportunities I’ve had.  But why do I expect it of other people, and convolute what should be relatively straight forward interactions?  Why can’t I accept the hand that’s offered without insisting that it should be the other one?