i was a little hesitant in talking about this altogether.
some of my first degree friends do have access to this blog, and i wouldn’t want to make them feel bad by stating some things that they have done which have made me feel uncomfortable in the past.
also, i didn’t want this entry to come off as a rant (and/or an entry to shame any friends), because i know for a fact that my friends have my best interest at heart.
moreover, i’ve already forgotten most of the bad experiences i had,
i had to dig through my brain for bits and pieces of all the frustrated moments i had when dealing with less sensitive friends.
i also got some additional help in jerking my memory from some of you.
let me let you in on an interesting fact – i never intended to make this blog public to my first degree friends.
i am only comfortable with strangers seeing this side of me.
pretty sure none of you want your friends (who’ve seen the happy and confident side of you) to see the sad and pathetic little creature that’s holing up in the darkest corner on the face of earth right now.
pardon my language and don’t take it personally because that was exactly how i felt like back then.
i was that sad and pathetic little creature.
i’ll just pray hard that none of my first degree friends will ever get to read this entry.
guys, i’m putting a lot at stake to put up this entry!
jokes aside, i hope i can present a different perspective to the people around us.
i felt like i was a fish living in a aquarium back then, with my friends and family living on the other side of the glass. all they could do was to watch me suffer.
once in a while, they meddle around with the water temperature and pH in hopes of making me feel more comfortable, but they won’t know for sure if i do.
throw in some food hoping to keep me full.
watch me waste my days away.
they see me doing the things i do but they just can’t understand why.
i tried to gesture to them and explain my actions, but they just can’t understand what i’m saying.
there seem to be a communication break down somewhere.
and then i realized..
they don’t know the fish language because they didn’t go through TSW.
(to be fair, there were many times when i simply can’t be bothered to explain my actions. like when my dad asked me why do i not look at him when i’m speaking to him.. i really don’t know what to say. *avoids all eye contact*)
so this is me trying to translate my fishy thoughts into words that’s understandable by humans,
letting you into my fish brain in hope of helping you understand why i did certain things i do.
understanding my words is one thing, understanding my rationale is another.
i hope it’s more of the latter.
disappearance from the social circle (or the face of earth)
i can’t remember how many times i have to say no to my friends when they asked me out during my TSW days. since i was such a social person before TSW, it’s such a big change for both my friends and i. i used to meet them on a weekly basis, when i started to reject their weekly meetups they are bummed out. i told them that my skin is bad but they’ll always tell me “it’s okay, we don’t mind the way you look!”.
i know that they didn’t mind the way i look. no one ever did. I KNOW, I SWEAR TO GOD! but the gist is.. I HATED THE WAY I LOOK, and that’s all that mattered. it doesn’t matter if they didn’t mind, because I MIND.
while i do not have the theories to explain why exactly things happen this way, but i know it has got to do with self esteem. if i don’t feel good about myself, the last thing i want to do is to socialize. it’s not as simple as not wanting to be seen. especially for me, i’ve had way too much positive attention drawn to my appearance in the past, do you think i want anyone to see me as that ugly creature!? HELL NO! (disclaimer: i also know that i’m the only one who thinks i look like a monster during TSW. but like i said, it’s how i saw myself, not how others saw me.)
i can only say.. IT’S COMPLICATED! unless you have personally been through a bout of bad skin before (e.g. acne outbreak, eczema outbreak, or any other conditions that manifest on the outer surface of our body that can been seen by others), it’s a concept difficult for normal people to grasp with.
i wish they didn’t constantly engage/invite me.
i know they’re all keen to meet me to do what we always did – chilling out over food and drinks, having fun, etc. but i was really sick of having to constantly reject them. it doesn’t feel good to say no, in fact i hate saying no to my friends. so what began as a gesture of good will (to engage me) eventually burdened me (because i have to say no 😦 ). just how many times can i reject a friend before i start feeling bad? it doesn’t take many.
i understand that it was difficult for them to understand just how bad my skin is, they might even end up misunderstanding my rejection as me not wanting to continue our friendship/not valuing our friendship, which is totally false!
some of my skin friends shared similar experience on this: rejecting our friends who want to come over to visit us. while we totally understand you’re doing this out of goodwill (because you truly care about us), we really don’t want to be seen. it’s not just about being seen outside in the public. it’s about being seen altogether. end of story.
speaking from my own experience, i had to put on a fake smile to entertain people who came to visit me. i was in a mental war with myself. on one hand i really resented people who didn’t listen to my needs and wants and insisted on visiting me at my place, on the other hand i know i shouldn’t harbor a bad feeling towards them because they’re just being nice (i actually feel bad for resenting my friend. major guilt trip. thanks so much for that!). it’s such a conflict! the middle ground is then for me to fake being happy (so that they won’t see how depressed i am and become more worried, also to hide the fact that i am unhappy about them defying my wishes) and thankful to have my friend come over, but secretly wish for them to leave ASAP. and when they finally do, i let out a small cheer while somersaulting inside my heart. it’s so tiring to have to fake all that, and i did that for a good 1 year.
get out of my bubble and gimme my space! stay out of the 100m/330ft (just an arbitrary value) radius locus.
i can’t emphasize this enough: i really don’t want to be seen, AT ALL. what’s the best way for me to still be socially connected to my friends but doesn’t require myself to be seen?
that’s right, i practiced witch craft to get an out of body experience so that my soul can roam around freely and be in touch with my friends. we are able to hold conversations that kept me sane (and reminded me that i’m not anti-social, which means i’m not having depression) without them seeing my cracking and oozing skin.
*chuckle* can’t help but laugh at what i just wrote.
ridiculous as it sounds, it’s actually possible.
i didn’t have to do some black magic ritual though.
i just needed.. WIFI. and a smartphone. or a pc with internet access works fine too.
in fact that’s the only way i am connected to my friends – via texts. it’s the only channel that can keep me sane, and lets me know that i’m still part-human. and my little angels will deliver doses of sacred laughter into my life (sacred because it’s so rare back then, i thought i can never laugh again). i can’t imagine how much darker my life can get if i don’t even text my friends. *brings tears to my eyes thinking about them*
i could have written a book that is similar to the movie cast away! except that the volleyball is replaced by my phone in this case, since it’s the only way i have conversations with the outside world.
i’m tremendously thankful for my iphone and smartphone apps like whatsapp because it allowed me to send unlimited text over the wifi for free. i was able to chat with my friends from overseas without chalking up a hefty phonebill (because global SMS are expensive).
my negative outlook on life
this is a no brainer. the optimistic and cheerful juliana i once was got kidnapped by TSW. if you’re lucky, you will know that i’m wound up at home, constantly depressed and sad. nothing motivates me. if you’re unlucky, you’d have been banished from my list and never hear from me (until i recover).
i love telling people “i feel like death. i feel like dying right now. i want to be in a coma, wake me up when everything ends. is this hell? is this what hell feels like?”. they usually beget nothing in return because they’re so effective in driving people away.
or maybe my friends just didn’t know how to respond to that.
please don’t compare me to others to put me in perspective, or to tell me to get my shit together
the one thing that got on my nerve the most back then was people telling me
“you know your situation is not the worst out there? there’re people dying of terminal diseases, that’s a life sentence! whereas you, your TSW is just temporary. you need to change the way you think and be more positive!”
why this ticks me off: it’s like telling a person who’s in pain to get his shit together, and that he should stop whining about his pain because there are people who’re worst off and are not whining about it. so what!? will knowing someone out there is suffering harder than me take away the pain i’m feeling? hell no!
so i had a friend who was doing exactly that. while i understand that he was just trying to put me in perspective so that i will feel less negative, it boils down to how he framed his message.
when i hear that sentence, i feel a mixture of anger, disappointment, and resentment.
angry at hin for not being more understanding, disappointed in myself for disappointing him, and resenting myself even more for not being able to be as strong as i wished to.
i think i guilt trip myself more often then i realize.
i already know i’m weak, i think i suck and that i am underserving of anything, and he had to remind me what kind of a wimp i am for not picking myself up.
geez, compound that with the lack of self esteem..
cheerful juliana? she already died and reincarnated to the amoeba (my choice of lowest life form), don’t you know that?
true enough, my TSW only accounts for 2.5% of my lifetime (assuming it’s 2 years out of a 80 years lifespan), but what my friend failed to understand is that for a lot of people who’re suffering from cancer, or has lost their limbs (those were the examples he brought up to me), the pain they go through is completely different from what i went through.
i think i had a lifetime worth of pain and torture within that 2 years.
i’m being reminded CONSTANTLY of the discomfort that i was in.
i was caged and encased by my skin, the very organ that is giving us so much pain.
i was uncomfortable EVERYWHERE! every second, every minute, every hour, every day, until the end of the TSW journey.
i don’t think those terminally ill patients are in extensive pain for such an extended period of time (even if they are, they get morphine for it. at least that’s what house led me to believe) and when you’re not in constant pain, you can afford to be more positive.
that’s clearly not the case for me.
also, i was compared to people who were born with defects that will affect their entire life (and yet they have a positive outlook to life). this is another bad comparison because they have never lived the normal life, their point of reference is vastly different from mine. i had a good and normal life prior to TSW.
for those who were born with disabilities, there probably started life somewhere near the normal sealevel, and stayed there all their life unless they found a way to improve their standard of living, or their condition deteriorate.
imagine that great fall of mine, it was like from the top of a mountain all the way to the seabed. i had to adapt to an entire new way of living after that. yea.. i grown scales (literally! hahaha) and gills too. i didn’t turn into the mermaid sadly.
“you need to snap yourself out of this. you need to make the effort to make yourself feel better.”
nuff’ said. when depression sets in, i lose all motivation to do anything, let alone to snap myself out of it. i mentioned before, i just let depression swallow me whole. i could have used a little bit more of his empathy at this moment. and the fact that he’s not going through what i’m going through gives his words less weight.
so what happened after the supposedly motivational talk by my friend?
in my mind: get my shit together? i’ll throw my shit at you. oh wait, you know what? I’LL THROW TOPICAL STEROIDS AT YOU.
i know i’ll be positive again after my skin heals, if it heals that is..
it’s not that i don’t know that TSW is only temporary. i know. i also know that i’m so much more luckier than all the examples that he’ve raised. but the constant discomfort mind-fucked me so badly, i just can’t show him my rational self. instead of drawing such comparisons to put me into perspective, why not just empathize with me and say “it’s okay to feel sad and depressed now because i know FOR SURE that you will be back to your happy self eventually. it’s just a matter of time!”.
this does the job of telling me that you acknowledge my pain (even though it’s just lip service) and why i’m feeling this way, at the same time letting me know that you support of my actions and have absolute faith in my healing (and that the depression will leave me as soon as my skin heals). the last bit is just to remind me that the condition is only temporary. it’s the same message, but packaged in a better way, don’t you think?
oh well. i think my friend was sick of empathizing with me all the time.
maybe. just maybe.
it sucked hard when i’m already judging myself for letting my skin/depression affect me so deeply. please don’t add on to the judgement that i already sentenced myself to! just how low and undeserving can i get?
i really want to reassure all loving friends of our fellow skin warriors that the depression will leave once the skin heals. the reason for our constant sadness is our bad skin, once the cause is removed after we’re healed, there’s simply no reason for us to be depressed. in fact, TSW will reset our happiness threshold, leaving us a happier person on the whole.
i knew my depression and negativity stemmed from my bad skin. and i’ve proved it because once my skin healed, the cheerful juliana is back! she beat evolution (which takes millions of years) and morphed from the amoeba back to human form within months.
just a word of caution.
empathy feeds self pity. so this has to be done in moderation because self pity is another weight that pulled me to new depths of depression.
ironic as it sounds, most of the time when i pity myself to a certain extent, i’ll reach a point whereby i just can’t stand my pathetic-ness anymore,
i’ll then snap myself out of it and gain some positive energy out of it.
i do feel better after that.
“no one can help me, not even myself”
my friends will tell me “i wish i can help you” (which rates the mildest on the get-on-my-nerves scale because i know they meant well), or “why not you get a second opinion from other dermatologist out there so that they can help you?”.
it revolved around the notion of “there’s help out there but you’re not helping yourself.”
DISCLAIMER: to reiterate what i mentioned above, i do know that when friends say that they wish to help me, they are really just trying to be nice. it’s just like how people say “i’m sorry” when they hear of someone’s passing. however, the part about suggesting me to seek help from professionals is just.. i can’t bend my mind around it – why are you pushing me back to the very people who’ve landed me in this spot?
i usually reply them with this “it’s okay, nobody can help me. not even myself.”
to me, the only help that is seen as true help is something that can make us heal faster. since there is no way they can speed up time, i really don’t see a way that they can help us unless they are the time bender. there’s just no way you can make our skin feel better (which will in turn make us feel better).
i wished they didn’t push me to try other form of treatments and/or see another doctor
i’m begging you, please don’t push me back to the dermatologists. there aren’t many out there who are like dr rapaport who supports TSW. i’ve seen how condescending derms at the NSC refute my claims that i have TSW – they even made me cry in the consultation room because they told me in my face “there is no way your eczema will leave you. you need to use steroids for life.”
i also have friends who are constantly bringing up how some magical alternative treatment can heal my skin. only steroids can bring my skin back to life within a short period of time and that is totally out of the questions. what my skin wants is steroids. my skin is picky like that.
i said no to all forms of alternative treatments because i know what i had was steroid withdrawal, not just any form of skin inflammation or allergies. if what i had was pure atopic dermatitis, then i might try those.. but no, that’s not what i had.
if i was addicted to tobacco, do you think magic treatments can help my addiction go away faster? will it stop my body from craving for nicotine? the only thing that is remotely promising are the nicotine gum and patches that delivers nicotine to a nicotine hungry body.
topical steroid patch, anyone?
i need their understanding and support, that’s all.
it would mean a lot to me if they showed me they truly understand what TSW means (that i will heal without medical intervention) by telling me “i can’t wait for that day when you prove those skeptical and ignorant dermatologist wrong!”.
i wanted to know that they’re on the same side as me, that we support the same cause, and that they’ll always be there to listen to any rants or complaints that i have, and to feed my self pity once in a while.
it is important for me to know that they believe that i’ll heal without the doctor’s help because TSW is not recognized by most dermatologist, it sometimes feel like i’m fighting this war against the entire world.
it means a lot for me to know that my friends and family are on the same page as me, and that we’re fighting for the same cause, knowing that i’m not fighing alone.
it’s the little thing that matters.
actions like this speaks so much more than (small voice: empty) words.
i cut contact with a few of my friends (temporarily)
some of my friends just can’t understand what is TSW, neither can they imagine the severity of it. i don’t blame them at all! going through TSW opened my eyes to the world of suffering that would otherwise be non existent in my world, let alone my imaginations. i really don’t expect them to understand just how bad i feel. all i ask for is their support.
there are some friends who are really determined to help me to get out of the shit hole i was in. they will ask me out from time to time despite me rejecting them many times. there’re also friends who never gives up hope on alternative treatment and eggs me on to seek medical help so that i can get better soon.
i’ve done my part in explaining what TSW is and tried my best in giving them a better idea of my condition, but their unfaltering spirit renders my efforts in vain.
(small voice: if a friend of mine tells me he/she has TSW, i’d google and find out what the hell is it that stole my friend away. but i guess i can’t project my own expectations for myself onto others.)
drive me to the wall or i’ll just jump over and you won’t see me again
i’m not sure if some of my friend actually noticed it.. but i just stopped responding to them after some time. i never initiate chats with them anymore, and whenever they tried to talk to me it’ll be short and concise replies.
i’m just too tired to explain myself to help them understand my rationale. it’s not that i never tried before. i tried upteen times, and i’m truly exhausted.
leaving them was a last resort.
there’s nothing a desperate person can’t do, especially when i already have so much of my own shit to deal with, it’s really difficult for me to deal with any thing in addition.
it’s akin to a fight or flight situation.
quoting sun tzu’s art of war: if all else fails, retreat.
and to throw in a chinese idiom: out of the 36 stratagems, fleeing is the best.
those who care don’t matter, those who matter don’t care
the context of this phrase is.. those who care about how i ignored them don’t matter, those who matter to me don’t care about how i treat them.
so far i’ve raised many examples of support gone wrong.
but i also want to share with you some of the good experiences that i had.
i ever asked a good friend of mine how he dealt with me back then.
he’s a friend who stays in hongkong, so there’s no way we can see each other (big sigh of relief) and we’re just conversing through texts all the time.
he told me he just gave me a lot of space that i needed.
when i told him i didn’t feel like talking, he’ll just retreat into the background and tell me “sure, we’ll talk when you feel like it!”.
he don’t judge, he never did.
he just kept encouraging me with “you’ll be back to your normal self soon!”.
he never asked me to see a derm.
he also never try to compare me to others to put me in perspective.
my girlfriends did the same.
it’s the same pattern.
they just made themselves available for me whenever i needed someone to talk to,
acted nonchalant about my skin condition and chatted like how we always did.
they don’t probe.
they didn’t ask me out or suggest coming up to my place to visit me.
all in all, i think TSW has filtered out some of the peeps out of my life for good.
those who i want to keep for life are those who stuck by me and supported me wholeheartedly.
those who i ditched are not worthy my attention anyway.
i mean.. if they can’t even have the basic courtesy to google what the hell is wrong with me, it tells me how important a friend i am to them.
i would rather focus my love on those who cared for me. they deserve it, and i owe my life to them.
a little tidbit to end this entry.
after i told my friend that my skin is red and dry and flaky, i showed her a photo. or when i see a friend in school.
friend: your skin isn’t as bad as your described! / you don’t look that bad!
human interpretation = i’m trying to make you feel better, if i tell you your skin isn’t as bad as what you think, you should feel more comfortable right?
fish interpretation= my redness isn’t as obvious on photos. what do you mean it’s not as bad as i describe? you can’t fucking feel my pain! you’re not the one having this rotting skin! SHEESH!