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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19 Responses to Mama Sick’s Handy Guide For the Healthy Person

  1. Wow…I can understand some of those comments but some are just clueless! Thanks for the tips. I have an “invisibly ill” friend and it helps to know what may hurt her feelings.
    dysfunctional mom´s last blog post ..I Don’t Know If I Can Yell Any Louder

  2. Mrs4444 says:

    Some people are just dumb. Maybe you should print out your post and keep copies on hand for the next time… 🙂

    Thanks for linking up!
    Mrs4444´s last blog post ..Sundays in My City: Hodge Podge

  3. Well said. I don’t want to be a patronizing schmuck, either–too many of those around. My only wish for you is that you will be able to get through each day with the strength that your family inspires in you. Thank you for being frank and honest in this post.
    Martine | Work at Home Mom Writer´s last blog post ..5 Steps to being a more sustainable mom

  4. Kimberly says:

    I think that most people probably make those errors completely innocently. Thank you for sharing your perspective so that others may understand.
    Kimberly´s last blog post ..The Big Question

  5. Barb says:

    I agree with Kimberly. I think most people have good intentions but just stumble with their efforts to be gracious. It’s enlightening to read this post and your list because it helps to “hear” those comments from someone struggling (and coping) with chronic illnesses. Again – hooray for your blog and writing – you have a great combination of poignancy and wit and brutal honesty. Oh – and happy SITS day.
    Barb´s last blog post ..Winter Help to Get You Out the Door

  6. Tricia O. says:

    When I was growing up, my mother was diagnosed with fibromyalgia. She dealt with many of the issues you mentioned in this post, and even as her child it was difficult for me to know the right words to say.

    Happy SITS Day!

  7. Marie Cole says:

    Okay then, good to know….“Well, I hope you can be as well as is possible.” :)))))
    Marie Cole´s last blog post ..Color Palette, All Aboard

  8. Melissa says:

    Thank you so much for sharing this! Even the most well-intentioned person can put their foot in their mouth so it’s great that you’ve given everyone something to think about.
    Melissa´s last blog post ..My Foray into Flea Markets

  9. Joanne says:

    I hope you are enjoying your SITS day and NOT sick in bed. With the exception of a few of those comments that sound like people who just don’t want to hear about it, I think most people want to wish you well but don’t know how to say it and are not able to relate to being sick all the time. Thanks for the pointers. I may have said “feel better” to people myself in similar situations only because I hope that they will have better days ahead. I have some baffling autoimmune conditions myself but consider myself generally healthy. With autoimmune diseases, it is hard for people to imagine how your body overreacts to things that don’t cause them any problems. I was once in that category myself. Have a great SITS day! Nice t meet you.
    Joanne´s last blog post ..Road Trip

  10. Morgan says:

    Thank you for your honesty … and it’s true, just one little tweak of phrasing can change the whole feeling and meaning of a sentence.

    Enjoy your SITS day! 🙂

  11. Good tips. Sometimes people just don’t know what to say in a situation that’s sad.

  12. Heather says:

    So great for you to share this. Some people just don’t get it. If you don’t look sick or in pain, then they just can’t seem to process what you are going through.
    Heather´s last blog post ..Hooray, It is my SITS day!

  13. Venus says:

    Wonderful post! I’d like to think that I’ve never said things like this… but chances are I have. Of course, I’ve been on the receiving end, too. Bottom line is that it’s good you’re helping people understand and giving them the language of support and acceptance.
    Venus´s last blog post ..Extraordinary Conversation

  14. Laura says:

    Guilty. Thank you for the insight. I know people who have some of your diagnosis. I hope your insights make me a better friend.
    Laura´s last blog post ..A song about beauty

  15. I sometimes don’t know what to say and I realized that trying too hard to say nice things can come out all wrong. Thanks for the tips!
    Belle Delos Reyes´s last blog post ..Post-It®

  16. “You don’t look sick!” that’s probably the worst thing someone can say to a chronically sick person that suffers from an illness that isn’t visible.
    People just don’t know what they’re talking about…sometimes it’s seems to me as if my illness is more of a problem for them than it actually is for me.
    Well…most of the time, I just don’t have the strength get all worked up about what others think of me…and it took me quite a long time to accept that I don’t have to care, that I can’t change other people’s ignorance 🙂

    oh…and happy belated SITS Day btw 😉

    xoxo
    Tagtraumbärchi´s last blog post ..Multi(t)asking?? – What’s That?

  17. Janelle says:

    Just found your blog from the SITS site. I am so sorry you have to not only deal with your illnesses, but also with the comments made by misinformed people. So many people fail to see that even though something is not visible that does not mean it is not there.

  18. Jamie H says:

    I love that you call your illnesses “Invisible Illnesses”. So true, to your average person passing you by, you don’t look sick. Doesn’t mean that you aren’t. Thanks for bringing this to people’s attention. Happy SITS day!
    Jamie H´s last blog post ..Fun Stuff Fridays #6

  19. misssrobin says:

    Amen!
    misssrobin´s last blog post ..What Will This Year Be?

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