Mama Sick’s Handy Guide For the Healthy Person

(This will be my final contribution to Invisible Illness Awareness Week.  If I have helped one new chronically ill person find strength, one chronically ill mom say “Me too!”, if I have educated just one person when it comes to better understanding those of us with Invisible Illness, then I will consider my efforts a success!  Four posts in a row on chronic illness, whew!)

Dear Healthy People,

I know you mean the very best when you say certain things to us chronically ill people, but here are a couple of things that you always say that kind of cheeses me off, and I cannot be alone in this:

Scenario 1

“Feel better.”

Whether I have talked with a healthy person and told them only about my Lupus or that I have 15 diagnoses (and counting!), the answer is always the same:  “Feel better.”

Sir or madam, I have 15 diseases.  It is unlikely that even one of them is going to be cured in the next five years, much less my lifetime.  When you tell me to “Feel better”, I politely say “thank you”, or if you happen to be the judge in my disability case who told me to “Feel better” and has YET to give me her decision for two months now, I may say, “Thank you very much but with all due respect, you honor I will NEVER feel better!”

Here is a better response when you have ended your conversation with a person who has a major disease, or many diseases:

“Well, I hope you can be as well as is possible.”

or

“I hope you are as well as can be.”

See the big difference?  Look how easy that is!  Your end to your awkward conversation has been resolved!”

Scenario 2

I am talking to a neighbor or a friend that I haven’t known very well:

a) “Stop saying you are sick!  You look just fine to me!”

or

b) “You need to be more positive!  You have so many joys in your life!  You have a wonderful son! You have got to LIVE for HIM!”

or

c) “Well, you are still so beautiful!  You look like you are in your twenties!  You certainly don’t look sick!”

Why I do not need to hear quote a):

If you don’t want to hear that I am sick then please don’t even ask how I am doing.  A simple “How are you?” or “Hello!” in passing will suffice.  Please do not debate that I am sick, no matter how well I look, and if you keep on doing it I will have my Rheumatologist give you a call to confirm that I am, indeed, very ill.

Why I do not need to hear quote b):

I am not a negative person, I am a realistic person.  I have 15 diseases, one of which can be fatal. Google those stats on your computer.  I am most likely not going to have an average life expectancy. It is not negativity, it is fact.  And if I do happen to live to 80, it’s a bonus!

I do have many joys in my life, one who is my son and HE IS one of the great motivators in my life. Yes, thank you, I am aware how wonderful my son is, he lives with me.  And I am not just living for him, I enjoy writing, reading, talking with my friends, being with my husband, laughing…

I am more than my diseases, I do know that.  Life’s not all pain, sickness and poverty, I have much love and happiness.

And why I do not need to hear quote c):

Thank you for the compliment.  I know that I am an attractive female.  I was born that way. The natural oils in my skin which gave me acne that plagued me through my teens is serving me well now that I am forty.

Thanks for saying I don’t look sick but…

I would gladly give up my looks and look ten years older to be well again so I can enjoy my son, and husband, and zoos and museums and Disney World without having to be sick in bed for two days afterwards.

So, what should you say to a chronically ill person?  Listen to us, please don’t feel you need to give us any advice, we are not asking you for any.  You do not need to be our cheering coach, you just need to be our friends.

And the reason I don’t look sick?

That is why this is Invisible Illness Awareness Week.

 

 

 

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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