“Just chillin”
I miss the times I didn’t have to monitor how far I walked, how tired I felt, how much I had already done today even if this particular walk was very exciting and was blocking my mental reception of how I REALLY feel. I miss running wild through fields with my hair out and no place to be, spilling coffee on myself because I felt compelled to follow the wind and didn’t have time to put it down, or put some shoes on for that matter. I miss the spontaneity of my life, the independence I used to have.
Only the last 6 months of my drug lord stash (oh and I threw a bunch out when we moved!).
After 7 years of being diagnosed and rapidly declining to a point that I haven’t been able to do ANYTHING for 3 years…Yes, anything the world would know to ask about, I haven’t done. After all that time I still feel invisble, still feel unnoticed. Likely because people call this illness an “invisible illness”. I know now more than ever.
I don’t feel like I have the problem of over-identifying myself as sick, because only few really see it in action. People say that when you spend so much time dwelling in your sickness it makes you worse, it becomes your identity. I would say I’m far from this happening to me. I spend most of my days reminding myself that I’m sicker than I think. Not because my psychology is broken and I’m in denial, but because this sickness is so invisible to so many, it also feels invisible to yourself too. It feels illegitimte.
I suspect some of this comes from the common phrases used when I struggle to explain the A4 page of daily symptoms I experience to people and settle for “autoimmune disease” or worse I’ve learned “chronic fatigue”(a catch-all diagnosis doctors like to use).
Often you get in return “just tired hey”.
If they have a terrible sense of emotional intelligence they might say “me too”. Or when you’re asked what you do for work, and you say “I’m really sick I haven’t been able to work or study for a while” and you get “so just chilling then? Yeah its good to rest”.
HAHA!
OR even worse they’ll tell you of a time they had a similar thing or just worked too hard and and burned out for 6 months. And as terrible as that is right?! It’s not about you “Jason”. Not this very minute.
Hot tip from my counselling degree, if someone shares a hard thing instantly backing it up with a similar thing you think you can resonate with may not always be helpful until you’ve asked a few questions. The likelihood that even same circumstances are experiences differently by different people is large. Humans are unique and come with different lenses, programming, pain and experiences. Here’s an example of what the guy who told me he gets it could have done.
asked me more.
Because he might have understood his 6 months thing that he got over and my 7 year thing i’m getting worse from could be two different things. Which in turn would have saved him feeling like he needed to fill the space with a 5 minute chat about himself, and then feel guilty about turning the conversation onto himself, and then try to make some inspirational speech about it.
validated me.
By saying, “I don’t know all the details of yours, but I was out for 6 months and even that was incredibly hard, so whatever yours looks like you’re also a trooper.”
Sometimes you don’t want to get into a huge convo with a stranger about all of their symptoms which is why option 2 is great. What i’ve realised though, is that most of the time, people struggle to feel helpless. They want to fix it with words, instead of sitting in the sadness and grief of it. I think that’s because it’s costly to feel. And in a world where we keep people at a social media distance, and feel emotionally bombarded by bad news on the media, we’ve lost the slowness of sitting in the hard things, and instead run to telling people how they should think, feel and do. We fortune-tell things we’re not sure of, and we give unfortunately harmful platitudes.
If you ever get stuck, and all you can do is validate how hard their stuff is, man you’d change their world. People don’t intent to one-up other people. They are often just scared to acknowledge what is really there, because when we don’t have answers for suffering, we feel like we’re drowning.
I guarantee if you tried responses that washed over or minimised someone’s experience battling cancer… well, you likely just wouldn’t. You’d likely be out of words and say “wow I’m so sorry, that must be so hard”. So yeah, I’m not loosing hair, and I’m not going in for an IV every week (at the moment) but I have been sick for a while, and it is invisible to a lot of people.
Although I don’t expect strangers to give slow responses, because whatever, they’re just asking what I do for work, they weren’t planning on holding this thing that’s not really a surface topic. This invisible business plays out in so many other ways. It plays out when people take my external appearance and use it as an indicator of how much I struggle.
Those assumptions make it so hard to keep healthy boundaries that guard your energy. To say:
“no I can’t go out that late at night”, “I can’t walk that far”, “I can’t drive to see you” “I can’t come to that 3 hour concert”, “I struggle to hang out for long in one-on-one sessions because it drains me”. ”
Trouble is my body doesn’t always show up with an accurate picture of how I feel inside. The intense pain, the exhaustion on my throat muscles from talking, the constant dry eyes i’m pumping drops into every 5 minutes just so i can keep looking at you. It’s the feeling of being up for 3 days straight and fighting to function like an average human.
It’s the cognitive wrestle, as I can’t place words, as I read things 3 times and sometimes am too tired to read at all and all the words blur before me. It’s the thoughts I struggle to place and feelings I can’t get out because I don’t have an outlet. It’s the receptors in my brain that don’t make enough dopamine to be motivated. And the motivation that’s affected by the extreme fatigue that makes it hard to want to walk, to feed myself, do difficult activities. It’s the throbbing down my spine, headaches and migraines, low blood pressure, and the dizziness. It’s the constant pain in my abdomen, ribs and back. The opioids that don’t work anymore, that create mild heart attack symptoms. It’s the constant feeling of never getting enough sleep, it’s the heat packs in the middle of the night, it’s feeling like someone is standing on your chest 24/7 because your muscles are so weak its exhausting to breathe, (Yes, exhausting to breathe). I actually pay attention to it most of the day because it’s not a subconscious thing anymore. It’s the amount of pills that feel more like a meal in my stomach than an appetiser.
I have wanted to die from the internal signals that literally yell, “please lay down and die, it’s too hard”. This is what happens often when I’m experiencing a crash because I cleaned the bathroom just that much more than I should have, or was with a friend 30 min too long.
But yeah you are right, I know everyday is a battle, but “at least you still look good”. haha. Yo you’re right, I know my purpose feels gone, I don’t get to be independent anymore, I struggle to get out of bed and keep going because life is just a walk, sleep, take pills, do exercises so can breath, eat, repeat, kinda thing. But at least I’m still “hot”. hahaha. yeah cool.
Mostly people think you’re lazy, or that the thing limiting you from getting better is your mind. In reality I could always, walk longer, talk more, keep my eyes open longer without my heart stopping. However, the agony in my body when I push it too far, is something visible only to me. I don’t often fall down when I do because I have a wild amount of mental control to not get there too often. Oh and I’m constantly surveying my energy, every second of the day. Before I ask another question of someone knowing it’ll open up a deeper, longer conversation, when I’m out, right now while I’m writing this. I’m incessantly having to ask myself, “Am I pushing too hard” and I don’t always getting it right but it’s a battle only I see.
Last time I was at the shops by myself, 2 years ago, I pushed it too far, I organised too many things for Josh to do for his birthday (I didn’t even go to them), but I organised it, and I needed more supplies for his party that night. So I drove to the shops 5 minutes down the road, I parked (mental exertion) I walked up and down the isles, and walked a few too many as I forgot where something was and I blacked out. Josh was out and no one could get me.
Also the deep trouble with this illness is that it’s invisible to the health system to. So knowing even if someone called an Ambo, my $4,000 dollar failure to control my black out, would be a waste because every time I’ve been they’ve denied me attention and care. And oh there’s nothing the hospital can do but give me painkillers and fluid to hydrate me. You can’t fix an immune system that’s stuck attacking its cells in an instant and there’s nothing they’ll bother to do about it even if you’re on the floor of the hospital (next to old chips and grapes from parents who have sat there too long with their kids too) even then, I’m treated as a drug seeker.
I digress, but the point is you can’t afford a hospital visit. Mentally, and financially. So you grasp on to the shelf, you focus on just staying upright, you focus on getting clear, and you leave everything else you needed and get out of there, manage to drive home, and spent the next 2 weeks paying for it. Oh and you realise the grief that you’ve lost another thing you can do. So you don’t ask for help or compassion, you just don’t faint, idiot. And you don’t put yourself in situations now you know you can’t handle.
I stare at walls a lot, I struggle to write this even. I can’t read much, I can’t drive, I haven’t done 90% of the things that usually bring me joy. I see my friends going on all sorts of adventures I used to go on with them, but they know they can’t ask me on now. I see others not having to think twice about leaving the house at night. I see a lot, but mostly, I see a lack of understanding, question asking and hence help.
Living with my parents for the last 2 months has been wildly helpful!!!! It’s been the best decision I’ve made. But largely, I see a lot people who wouldn’t see me as someone who needs the same help as another sick person. As hard as this is for me to say because I’m not a victim to this, but…
Just because you’re not a victim doesn’t mean you can’t feel the deep pain where need meets love.
One thing is for sure, I’ve been doing this long enough to know that the mental toll is wild. From the denial of people, to doctors. To being denied health care, to being told everyone’s methods of overcoming “their thing” and being shamed by some of those methods that assume you are the one preventing yourself from getting better.
What trauma research has taught me, is that with a few more hugs, a few more people willing to get in the arena with me, painful seasons don’t have the same power to destroy a person. Why? Because they’re endured together. And because when life slows down enough for the people who can’t keep up with the next big thing… those sick people aren’t gripping to their wholeness and purpose being the moment they become well enough for them.
I know that with acknowledgement from others that “this person is really sick”, I know I might get better at acknowledging it too.
Because instead of trying to push it to the side so I can meet others where they think I’m at, I can meet them where I know my body is at. That I might actually find it comfortable to be in my own skin, in my own story, in my own broken but beautiful body, that will hopefully heal someday! Yet isn’t anxiously holding on for the very second that doesn’t happen, because life around me actually looks beautiful now. Has purpose now. Has help now. Has empathy now. Has physical support now.
All in all. This is just a fraction of my experience. The point is. Keep asking your loved ones. Keep asking them what’s hard, so they can sometimes let down their brave face that pretends it's okay.
When we endure together, when we lay down our preconceptions of the other person’s experience, and our need to filter every experience by the things we’ve experienced ourselves, we allow compassion to enter. Comparison, the thief of empathy is silenced, and people feel heard. So listen a little more, assume less, and if you’re brave enough to sit in the place of grief, you’ll learn everything about them, and maybe even learn something about yourself. After all, we all move to the speed of our slowest member. We’re not rich in relationships if those around us aren’t rich. We’re rich together. We’re free because we’re all free. We heal together. We grow together. And in this department, capitalism has got it wrong. It’s not about our own quest for greatness, it’s a communal quest we’re on.
“Not free without you.”
