「Make Lupus Visible 2022」
我們的故事
即使世界有太多的失望有太多的不完美，記住不要對自己失去盼望，你才是真正把握自己人生的那一位。好好生活，好好吃飯，好好地愛。不奢求這些小不點丁的文字可以成為你的意義，親愛的請謹記，世界再壞，也一定有人願意倍伴您經歷狂風暴雨。
共勉之。
三三 / 策展的每一位
Sapphire
“别讓紅斑狼瘡症奪去你活得漂亮的權利。”
活得漂亮，未必僅僅限制於外表上的美麗。雖然臉上會有蝴蝶斑的狼瘡嘅表徵，但只要愛自己，充實自己，對自己生活有全盤計劃，這些都是令你漂亮的指標。
閒時請你好好和鏡內的自己相處，嘗試留多一點自我陶醉的時間，好好欣賞自己的美態，思索一下今天做得好的事。學會重新愛上自己，你依然很美！
不妨好好感謝一下今天努力生活的自己，學會感恩！沒有誰可以阻止你活得漂亮，任何人都沒有這個權利，除了你自己！有任何事情想去做，即管去做吧！
"Don't let Lupus take away your right to live beautifully"
Living beautifully is not necessarily limited to one’s appearance. There may be
butterfly rash on the face, but with self-love, personal development and a comprehensive life plan, you could live a beautiful life.
Take a good look of your reflection in your free time. Practise self-love more often, appreciate your beauty, and celebrate small wins of the day. Learn to fall in love with yourself again, gorgeous!
Learn to show gratitude to yourself for doing well today. No one can stop you or strip off your right to living beautifully except yourself! Be brave and go after the life you want!
CC
“在疾病和生活之中取得平衡，放下執念，遺忘也許是一種幸福。”
疾病給予你無限的痛苦，於是你就要用同樣的力度去疼愛自己。腎炎在紅斑狼瘡症患者中是十分常見的，情況嚴重的話可能需要換腎，或者造成身體器官永久受損。
雖然當時受疾病纏繞，但依然無阻要到荷蘭留學的目標，於是成為了一輩子難忘的回憶。見步行步是種生活態度，既然有些事情已經成定局，執着已經無辦法為事情作任何改變，何不把眼光放向未來，放眼於可以決定可以把握的事？
專注你現在生活的瞬間，過往的就由它過去，不要成為你另一個遺憾就好了。
"Try to strike a balance between surviving illness and living. Letting go of obsession and forgetting may be bliss."
Illness gives you unlimited pain, so you have to use the same intensity to love yourself. Nephritis is evident in most SLE patients. If things get worse, a kidney transplant may be required or it may cause permanent damage to organs.
Although I was suffering from illness at the time, I was determined to study in the Netherlands, thus it became an unforgettable memory. Playing it by ear is an attitude towards life. Things happen and are inevitable, fixating on those won’t change a thing. Why don’t we look ahead and focus on things that we can control?
Focus on the moment, let bygones be bygones, and don't let things become another regret.
雪
“We are all but a flicker in the universe.”
人類在浩瀚的宇宙實在太渺小，你永遠不會預知明天你會怎樣。患上紅斑狼瘡，盆骨及膝關節因為服用類固醇而有骨枯問題。雖然身體機能限制了行動力，但是心態、心境從來沒有被肢體規限，反而更想用其他方式去探索這個世界，發掘更多美好的事！
有了限制，反而想完成的事有更多，因為想用自己現在僅有的去完成更多的！不要因為限制缺少挑戰的勇氣，要做好你每天想要做的事，保持正面心態和堅持。
雖然繞了路，但是殊途同歸，每個人的終點都一樣，但你過程看到的風景比別人更多，相信你一定會成為最耀眼的一顆星。
“We are all but a flicker in the universe.”
Human beings are so tiny in this vast universe, you never know what happens tomorrow. My pelvic bones and knee joints suffer from bone dryness due to taking steroids after being diagnosed with Lupus. Although physical functions may have limited my energy and actions, my mentality and state of mind haven’t. Instead, I want to explore the world in other ways and discover more beautiful things!
With restrictions, I want to accomplish more, because I want to accomplish more with what I have now! Don't lack the courage to challenge because of your limitations. Do what you want to do every day, keep a positive attitude and be persistent.
You may have taken a detour, but all roads lead to Rome. Everyone has the same destination, but you will see more scenery than others in the process. I believe you will become the most dazzling star.
Wiky
“遇到困難不用傷心，開心面對才是最好的解決方法，順境時知道你最愛誰；逆境時才知道誰最愛你。”
永遠不會知意外和明天那個先來，要把時間和心機放在疼愛自己的人身上。
病發時曾經昏迷五天，伴隨骨枯，腎炎等併發症狀，生活大小事都要最愛我的人處理，沒想過這份負擔有多重。除了紅斑狼瘡症，以往也面對過癌症，一而再，再而三地確診讓我感到無力，但亦因為愛我的人沒有放棄，所以更沒有理由放棄自己。
一定要愛惜自己身體，身體能力許可的時候好好愛他們。經歷過頻死，每天能好好生活已經是恩賜，相信健康、自力更生已經是給愛人最大的禮物。
"Don't be sad when you encounter difficulties, the best solution is to face it head-on with a smile. You would know who you love the most in good times and know who loves you most in times of adversity."
You never know what comes first: accident or tomorrow. That’s why you have to put your time and effort on the person who loves you.
I was in a coma for five days, with bone dryness, nephritis and other complications at the onset of Lupus. The person who loves me the most in life has to do everything for me without even thinking how heavy this “burden” is. Except for Lupus, I have also faced cancer in the past. The repeated diagnosis made me feel powerless, but because the person who loved me did not give up, there was no reason to give up on myself.
Cherish your body and give love to your loved ones when you still can. Having escaped from the brink of death, it is a gift to be able to live a good life every day. I believe that being healthy and self-reliant are the greatest gifts to my loved ones.
Julienne
"遇到困難先不要太擔心，請先主動了解接觸困難。“
大多數人對於困境都是先憂慮然後沮喪，凡事先學會主動了解困難。積極面對，保持正面心態，那就是你主動迎戰困難，而不讓麻煩主動找上你。
患上皮膚性紅斑狼瘡，皮開肉綻，出血，併發性腎炎肝炎乃是小菜一碟，我知道這些情況是不可以避免，那就勇敢去擁抱這些症狀，努力去了解狀況，用最大的能力處理好，那就是對人生最負責任的表現了。
有時候遇上問題，先把情緒收拾好。與其花時間在怨天尤人，沉溺在負面情緒當中，倒不如學會以微笑應對，上天會給你答案。你今天已經做得很好了，明天一定會變得更好的，加油。
"Don't worry too much when encountering difficulties, be proactive and face it head on."
In face of adversity, most people get worried first then it turns into frustration. I believe we should learn to be proactive in understanding the difficulty first. Then face it head on and maintain a positive attitude. Only then, you won’t let trouble to trouble you as you have taken the initiate to face them.
Suffering from Cutaneous Lupus Erythematosus, fleshy skin, bleeding, and concurrent nephritis and hepatitis are just a tip of the iceberg. I know that these conditions are inevitable, so embrace these symptoms courageously. Try to understand the situation, and deal with it with your all, that is how you show responsibility to yourself.
Sometimes when you encounter a problem, compost your emotion and thoughts first. Instead of spending time complaining and dwelling in negative emotions, why not learn to deal with it with a smile, and God will give you the answer. You have done a good job today, and you will definitely get better tomorrow. You can do it.
Priscilla
“每個人都過着不容易的生活，你見到的一切都是別人辛苦建立的。”
恐懼來自於未知，紅斑狼瘡症的不確定因素令這個病更加可怕。
例如病發的因素，每次被紅斑狼瘡攻擊的地方都可以不一樣，患者往往會覺得束手無策，感到憂慮和困擾。情緒經常因病情受到波及，無奈情緒往往就是引致班狼瘡症發作的一個主因。而有部份紅斑狼瘡症患者因為對紫外線敏感，不可以長期照射太陽，亦因為很多工作單位的不理解造成很多誤會。
我們不奢求太多，但希望旁人面對事情的時候，第一反應先不要作岀批評，我們並不理解別人的故事和背景，每個人都有難言之隱，請適當地給予旁人多一點尊重，世界已經充滿流言蜚語和批評了，請不要再將世界變得更冷漠。若不善辭令，好好地當個聆聽者也不錯。
"Everyone lives an uneasy life but you may not realize other’s hard work behind as you watch them living their life gracefully.
Fear comes from the unknown, and the uncertain factors of Lupus make this disease even more terrifying.
For example, the factors that trigger the disease can be different every time. Patients often feel helpless, worried and troubled. Emotions are often affected by illness, and helplessness is often a major cause of the onset of Lupus. Some patients with lupus are sensitive to ultraviolet rays, so they cannot be exposed to the sun for a long time. They may be misunderstood due to the incomprehension of some employers.
We don’t expect too much, but we do hope that in face of adversity, they should not criticize patients first. We don’t know what others are going through. Everyone has a skeleton in the closet. Please show some more respect. The world is already full of rumours and criticism, please don't make it more heartless. If you can’t say anything nice, it’s fine to be a listener.
Mirror
“不要被病牽着走，你要掌握自己的生活，常存愛，信念，希望。”
面對眾人是開心果，但是獨自一個晚上仍然會偷偷流淚。
研究顯示高達24%至57%病人患有抑鬱和焦慮，患有抑鬱的風險比沒有紅斑狼瘡的人士多4倍。
雖然夢想被病耽誤，能力備受限制，但是我們依然是可以抉擇自己的人生，命運是掌握在自己手中的。也許別人未必明白你的難處你的痛苦，但請緊記不要對世界失去希望，總會有可以留得住你的地方。
多一點留意自己的情緒健康，有失落有傷心的時候總是可以理解，過後請對自己充滿信心，對世界出滿信心，積極保持樂觀正面的態度，所有問題都會迎刃而解。
"Don't be led by illness, you have to take control of your life, always have love, faith, and hope."
One may be the life of the party when with others but cries secretly at night when no one is watching.
Studies have shown that up to 24% to 57% of patients suffer from depression and anxiety, and the risk of depression is four times higher than those without Lupus.
Illness may have delayed our dreams and limited our abilities, but we can still choose the way we live our lives. Your Destiny is in your hands. Others may not understand your difficulties and pain, but please don’t lose hope in the world, there’s always a place for you.
Pay more attention to your emotional health. It’s understandable to feel sad from time to time, please have confidence in yourself and the world. Stay optimistic and positive. Things will work out just fine.
Mimi
“家庭，小朋友就是我人生最寶貴的禮物，我是他們的唯一。”
生兒育女是人生堅決想要成就的板塊，於是我們排除任何困難，都想接受這份上天為我們準備的禮物。當我堅決要成為母親的時候，明白自己所背負的人生就不僅是自己，而是一整個家庭。
對於自己是紅斑狼瘡症病患者，為自己的人生負責已經不容易，但是因為抱有希望抱有信念，也決意張開雙手迎接小朋友。作為母親，想要把最好的給予兒女，亦同時勉勵自己一定要活得精彩，遇到困難時心態一定要更堅強更積極，因為母親是小朋友的榜樣。
既然這麼大的風險我們都捱過了，相信已經沒有比這更困難的事。不奢求我愛的人有什麼大成就，但求可成為對方的支柱，開心健康成長就好了。只要你有一個生活的動力，請拚命地為這個動力獻上你的全部，生活會反饋你同等的回報。
"My family and children are the most precious gift in my life, and I am their one and only."
Having children is something that we want to achieve in life, so we did everything we can to be able to prepare ourselves to accept the gift from above, from God. The time I decided to be a mother, I understand that I am no longer responsible for my own life only, but my family.
It is already uneasy to be responsible for my life by having Lupus, but I have hope and faith, thus I am determined to welcome children into our lives with open hands. As a mother, I want to give the best to my children and at the same time encourage myself to live a splendid life. When encountering difficulties, I must be stronger and more proactive, because mothers are role models to children.
Since we have survived such a big risk, I believe there is nothing more difficult than this. I don't expect my loved ones to have any great achievements, but to have each other’s back, to grow old happily and healthily. As long as you have motivation, please dedicate your all, and life will give you the same in return.
Sam
“避唔到就一齊捱，毋忘初心，搏盡無悔。”
男女患上紅斑狼瘡症的比例是一比九，所以這個就是我們今次拍攝只邀請了一位男生的原因。
各類併發症出現，人生十分迷惘，拚命地跑卻找不到出口，最後發現信仰的光。心態其實是其中一個要訣影響紅斑狼瘡症的康復，聖經經常教誨「喜樂的心乃是良藥。」，有信仰的人至少是以是正面心態面對困難。
我一直沒有遺忘想要用自己的經歷去影響別人，最起碼想要以最大的努力去陪伴同行者。人生彷彿好像一輛列車，乘客不斷來來往往上上落落，每人的目的地都不一樣，但是在列車上總會有形形色色的人陪伴你。車上每一個人都有自己的故事，千萬要記住你總不會是孤獨一個人。
每個人的相遇都講求緣份，在這裏大家都願意聽你的故事，願意緊握你的手，願意分享，你並不孤單。
"If you can’t avoid it, then endure it together. Don't forget your intention, and fight without regrets."
The ratio of males to females suffering from lupus erythematosus is one to nine, so this is why we only invited one male for this photoshoot.
All kinds of complications appeared, and I was lost in life. I desperately wanted to find a way out but I couldn’t, and found the light of faith at last. The mentality is actually one of the key factors that affect the recovery of Lupus. The Bible often teaches us that " A merry heart doeth good like a medicine." People with faith should at least face difficulties with a positive attitude.
I have never forgotten that I want to use my own experience to influence others, at least I want to accompany fellow lupies on their journey with whatever I can offer. Life is like a train. Passengers keep coming and going. Everyone's destination is different, but there will always be different kinds of people to accompany you on your journey. Everyone has their own story. Remember that you are never alone.
Fate brings us together. Everyone here is willing to listen to your story, hold your hand and share, you are not alone.
Angel
“即使一呼一吸感到痛苦，不一定要自怨自艾，與痛苦共存，擁抱痛苦！患病不影響你的能力，在有限制情況下做好”
由於腎炎令身體腫脹，皮膚在短時間內收縮和擴張，令身上不同部位都有橙皮紋，但因此卻重新愛上自己的身體。
剛康復出院的時候，身體大不如前，甚至要重新學會走路。於是開始鍛煉彼拉提斯瑜伽，對自己身體結構有更深入了解，亦希望可以透過持之以恆的運動，重新鍛練身體弱化的肌肉，改善身體線條及體態等等。希望可以以自身能力鼓勵他人！
雖然能力受限制，但不要害怕正視自己的弱點，打破對自己沒有信心的枷鎖，先去嘗試。無人完美，而且你的成功不是在乎於你的成就，請緊記要欣賞自己獨特的地方，這因為你是你，你並不是誰。
"Don't feel sorry for yourself, even if it pains you to breathe. Learn to coexist with the pain and embrace it! Illness does not affect your abilities, so try do well even under limited circumstances."
As nephritis causes my body to swell, the skin shrinks and expands in a short period of time, causing cellulite in different parts of my body, but I learned to fall in love with my body again.
When I just recovered and was discharged from the hospital, I was physically worse than before and I even had to learn to walk again. So I started practising pilates and yoga, and I now have a deeper understanding of my body structure. I hope that through persistent exercise, I can re-train my muscle strength, get toned, improve my posture, and so on. I hope I can encourage others with my journey as well!
Although your ability may be limited, don't be afraid to face your weaknesses and have confidence in yourself. Just try. No one is perfect, and your success does not depend on your achievements. Please remember to appreciate your uniqueness, because you are you and you are not just somebody.
