Thursday, 22 September 2011

Understanding People with Idiopathic Anaphylaxis for Dummies


1. Do Not Stare!
  • Did your mother never teach you that it is rude to stare? Wearing a mask does not necessarily mean that I am sick. I am merely protecting myself from the combination of the chemicals that is wafting around in the air.
  • I am protecting myself from YOUR germs and viruses.
  • Me eating from the Thermos does not mean that I am a cheapskate who can't afford to eat from the restaurant (my family ordered and is feasting away at the food by the way). Don't give us that disgusted look. Don't judge before you know the story. Or need I stamp the word, 'ALLERGY' on my forehead?


2. Do Not Ask Stupid Questions
  • "Could it be it's all in your mind?" Who in their right mind would 'pretend' to suffer from 'idiopathic anaphylaxis' and be home-bound, drugged up and not live a life of a normal person?!
  • "Maybe you need to be MORE positive?" If I'm not positive, I would not have lasted 30 months, mind you.
  • "Are you sure you are not imagining all this?" Let me tell you what IMAGINATION is. Imagination is skinning you alive and hanging you on a 10 foot pole and leaving you out there for the vultures to feast on you. Now THAT'S imagination!
  • "Maybe you are not praying enough?" "Maybe you need to have MORE faith?" "Have you been reading enough of the Word of GOD?" Just because I don't punctuate my every sentence with 'Hallelujah!' or 'Praise the Lord' does not mean I do not have faith or I don't believe. I believe in God. I don't believe in the commercialization of God. Period.


3. It Is Not About You
  • Don't take it personally if I move back, cover my nose or put on a mask because of your over-powering perfume. For me, it's like walking into the gas chamber. I can even taste your perfume and it translates into a chemical taste which burns my mouth, tongue, lips and throat.


4. Don't Say Stupid Things
  • Don't tell me, 'You certainly don't look sick! Are you sure you're that sick?' Seriously, who would in their right mind be out if they are LOOKING sick?! Of course I don't. It's my good day. Do you think I would be out if I looked sick???? I would be in bed, drugged up when I am SICK. Certainly not out shopping in a mall!
  • Don't tell me that my life is so pitiful, so sad, so terrible and so horrible that I can't go anywhere, eat like a normal person or live like a normal person. Of course I know that! It's like telling a cancer patient on chemotherapy 'You're going bald.' Duh!!!


5. Learn to empathize.

The following four points are for doctors, nurses and people in the medical line.


6. As a doctor, don't tell me that you don't know what is wrong with me, is afraid to dispense medicine and yet keep me in the hospital for 'observation'. Pass me to another doctor who understands and can treat me. Don't sit in front of me and stare into space for eternity and only respond when I interrupt your 'deep thinking' by telling me 'I don't know what to do with you.'

7. When a patient arrives at the ER telling you that he/she is having an allergy attack, don't tell them to have a sit first or register your wife/daughter/mother/god-mother/great grandmother first and then take your own sweet time discussing with the other nurses about the previous patient who almost died. Surprise! Surprise! Now isn't it surprising that your previous patient almost died with your immaculate service?

8. Do not ask me whether my Medic Alert bracelet is an amulet and whether 'Medic Alert' is in Thai language. Shall I  take the Hydrocortisone 250mg and Puriton and jab myself while you go figure out what language 'MEDIC ALERT' is in?

9. Don't snicker or snigger in my face when I tell you that I am allergic to chemicals. Your ignorance and arrogance = death for your patients.

10. Since this is a lesson for dummies, let me offer you some tips on how to deal and interact with people like me.

If you do not know what to say to me:


  • Ask me how I am. I will tell you. In a short and sweet manner.
  • Tell me that I look good/healthy and NOT 'You certainly don't look sick, you know,' dripping with sarcasm.
  • Tell me that I have your prayers and support. I will say thank you from the bottom of my heart.
  • Tell me to continue fighting and continue being positive. I will say thank you.
  • Don't bore the living daylights out of me by whining to me about your sad, depressing and pathetic life and that you wished that you were dead because you broke a fingernail or because you've been promoted from a size two dress to a size three or because your boobs have begun to sag.
  • Do not tell me that I should have MORE faith and try to have another child. This truly pisses me off. Are you going to take over my position as mother and raise my child up if I die as a result of a leap of foolishness?


I welcome genuine and sincere questions from people who want to know more. I despise people who ask questions to shoot me down or dismiss my condition like it's an 'imagined' condition or who pretend to listen and then ask me the same questions over AND over again. 

To all fellow people like me, feel free to add to what I may have missed out. Let's keep on fighting and stay strong my fellow friends!


16 comments:

  1. Everything you said is exactly right!

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  2. Hey there, Girl!
    I know exactly what happened to you, for i was there, remember? I've known all along that you're a fighter. And you've proven it. So don't give up no matter what! It's not over until it's over! There were times when I told God that i've lived a long enough life and that I'd be ready to take your place so you can live life "normally." (I've prayed the same thing in your Mum's case too. You and she are the only important women in my life. I would gladly give up my existence so you two can be pain-free.) But that's not going to happen. I can only look on helplessly and try to motivate you. This is cliched, but it's something you have to keep in mind always: there's always someone worse off than you, and of course there's someone better off too. that's life. you already know this-- whether you live or die is not in your hands, what you do with your life is. And you're rightly doing that. what more can i say that i've not said to you? i love you. fight on!

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  3. Thank you! You made me cry when I read this. And I love you too. With all that I have. You're the best dad a daughter can ever have.

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  4. BIG hugs to you too Lily!!! :)

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  5. Some of the questions are appalling! Guess there are alot of idiots out there, or maybe they have good intention but poor tact or just plain insensitive.... Either way it's definitely annoying. This is a useful and well written post dear and some parts are funny hehe. Keep on fighting :) HUGS!

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  6. Thanks Marina! :) BIG HUGS from me!!!

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  7. Wow...this is like reading one of those for dummies books series available at BBWS. This is so spot on. Hope i am not one of the dummies & if i ever was, i sincerely apologized & will try to be a smarty pants next time we meet.

    By the way, how r u??? U r looking good, I hope. U will always have my encouragement. Stay strong & positive always. Well, I won't bore u with my sob stories....heeheehee!!!

    p/s : mayb u could add this in - do not repeat the same questions or comments....dun wanna keep repeating same answers over & over again.

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  8. Tammie: Haha! You're ok. You've been great. Thanks! I'm ok now.

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  9. Hi Evelyn,

    Just want to add that I have allergy just like you for more than 25 years and carry 3 EPI PENs as sometimes one jab does not help much.

    I have since got married with my hubby prepared to loose me (back then) and have since then been blessed with 4 wonderful kids aged 2 - 13.

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    Replies
    1. Hi PL! Keep on fighting and thank you for your encouraging story! :)

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    2. Hi, I wanted to let you know that I enjoy your blog. I found out that I am salicylate sensitive a few years back. Later I found out that I have a mast cell disorder as salicylates can degrulate the mast cells of some people leading to allergic reactions. I have made improvements with mast cell stabilizers! I wanted to share that information in case you would like to do some research on mast cells. I will also include a link to my support group for mast cell disorders! Thanks for the blog! If it is okay, I am going to include a link to your blog in my support group!
      https://www.facebook.com/groups/344270359012276/

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    3. Hi I enjoy your blog! I was found out a couple of years ago that I am salicylate sensitive. Later I found out that I have a mast cell disorder. Salicylates can degranulate mast cells in some people. I am making improvements with mast cell stabilizers! I want to share with you in case you want to do a little research on mast cells. If it is okay I would like to put a link to your blog in my files of my support group for mast cell issues. Thanks https://www.facebook.com/groups/344270359012276/

      Delete
    4. Hi Pam! Thank you for stopping by. Yes, I will read up I must cells. I don't mind you sharing my blog. Thank you! I wish you good health. Do stay in touch. :)

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    5. * read up on mast cells.

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