Stigma Should Be the Only Disease that Brings Shame to Anyone Spreading It

A person who shames you because you are sick deserves neither your respect nor a place in your life. That’s what I said to a young woman who I met via a Crohn’s Disease group. She messaged me to ask for advice on how to deal with friends who “hurt [her] feelings, when they said they couldn’t understand “how [she] talks to other people about Crohn’s without dying of shame.”

Crohn’s Disease isn’t an illness that can be kept secret (or camouflaged) from people one spends a lot of time with, especially during flare-ups. I’m not just talking about symptoms like stomach pain, or having to poop too many times, or going days without being able to poop, or needing to poop but wishing you didn’t have to because it hurts so damn much. Yes, my Wicked Luvs, I know I just typed the word “poop” 3 times in the same paragraph. I did it because poop (make that 5) is one of the things many of us must get really comfortable with in order to live with Crohn’s.

I’m not suggesting that we must tell everyone everything about our toilet habits. However, we need people in our lives to whom we can safely say, “I can’t leave the house today because my butt’s on fire. But I’m not in too much pain, so we can hang out if you come over.”

Living with an illness should never be a cause for embarrassment. The stigma certain individuals and society as a whole have attached to some illnesses and disabilities (or to anything that implies a person doesn’t fit the box they’ve labelled normal) is the real disgrace. If you ask me, stigma should be the only disease that brings shame to those spreading it.

So I say to that young lady, and to anyone living with an illness, surround yourself with people who have hearts and brains big enough to understand that your disease isn’t you, but being chronically ill is a rather important part of who you are. They need to know that they will never be able to be a true friend to you, if they can’t accept (and try to understand) all of the parts that have crafted you—including the not so healthy bits… perhaps, especially the not so healthy bits.

What say you, my Luvs?
.

“If You Love”

If you love
me, others, yourself…

you’ll know why I grow
my sun in a pot. You’ll see
why the heart of my garden
is a rainbow. You’ll feel
wings that sprout
out of rooted life that will
always be able to fly.

If you love
me, others, yourself…

If You Love, by Magaly Guerreroa paged from Johanna Basford’s
Secret Garden: an Inky Treasure Hunt and Coloring Book
colored and poetized by moi

37 thoughts on “Stigma Should Be the Only Disease that Brings Shame to Anyone Spreading It

  1. I’m always happy to be one of those people in your life – and to make sophisticated Beavis and Butthead type jokes alongside you if it makes the day a bit more bearable. 🙂 The poem is a wonder, filled with hope and gentleness.

    • Sophisticated Beavis and Butthead jokes are my favorites.

      I colored that page and wrote that poem, right before I went into the OR for my latest procedure. If felt appropriate to share here, so I’m very glad you found it so. ♥

  2. I definitely agree!…. but, u already know that… When I worked in the local elementary
    school, there was a 5th grade girl who had Crohn’s… she never said anything… The teacher told me, since she was absent a few times a week… and naturally missed assignments… I did sit in when he spoke with her and she had a very grown up attitude… a very matter of fact one.. she took her condition in stride..
    btw, love your creativity w/that garden page… will have to hunt that book down!

    • I’m always in awe of how children deal with things adults have so many problems facing. It makes one wonder about the way society poisons people as they grow up…

      You might enjoy this book. It has many wonderful yummy bits to color and get inspired by. 🙂

  3. I have always wondered how people can be so embarrassed by their bodily needs and functions, but some seem to think they are not biological beings but little pouffy angelic clouds of marshmallow fluff.. When I was growing up, there were a ton of social shibboleths surrounding sexual intimacy, and there was a big stigma afa discussing it, with many many moral judgements made about people, and lots of public shaming for anyone, especially female, who ‘made a mistake.” Discussing things like the missionary position or whatever with some people was a huge social faux pas. Now to some extent I feel we have gone a bit far the other way, sometimes, but I prefer people speaking freely and feeling natural about natural things to uptightness and artificial shaming. I see this turning away from the reality of a person’s physical self because their illness makes you uncomfortable as equally phony and shallow, and in the end, harmful to the person doing it as much as the person receiving the callous treatment. Thanks as always for speaking your beautiful mind, Magaly, and giving us your example of real courage in the day to day fights,

    • It makes no sense to me, how we–as a culture–have managed to find so much shame in our bodies. It makes me sad to think that so many many people find their human, bodily needs embarrassing. Let’s hope that breathing never become a faux pas, or we might find a lot of people holding their breaths and hanging the bucket.

      May we all find the courage to be us, even if the whole world tells us that there is something wrong with that.

  4. This is a spot on and solid advice, “surround yourself with people who have hearts and brains big enough to understand that your disease isn’t you…” Society always impose on perfection, normal, and the list goes on.
    Love the art piece and the tender poem too.💙

    • I completely agree. After I wrote this post, I discussed it with my Piano Man. I was wondering if the fact that I was so angry at how her “friends” treated her might’ve clouded my judgement just a bit–they laughed at her, Jonquil. I wanted to have them in front of me and strangle them until they stopped laughing and started thinking. *sigh*

      Anyway, I feel confident now that although my advice was fueled by emotions, it was not free of thought–no one needs people like that in their lives. At least not, if one appreciates their physical and mental health.

  5. As a person who has periodic IBS, I certainly agree! There are times, especially after a meal in a new place, that I need to go home. I know where every bathroom is in every grocery store, hobby store, etc. that I frequent. As our food becomes more poison, we will see these conditions increasing. That little gal needs new friends. I am so glad she found one in you! The poem is a ray of sunshine!

    • I just laughed really hard. I know it’s not funny, but it makes me laugh anyway. People often think that living like this is just about the pain. But, as we both know, the most difficult part is the planning. We must know what to eat before a trip to a new place. We can’t get there and enjoy something new, since we don’t know how our gut will feel about it.

      Still, I’m glad that at least we are here reminding each other that we can do this… that there is sunshine out there, which we will enjoy as soon as we get out of the bathroom. 😀

  6. Your title is great wisdom and needs to be put on a billboard somewhere. I ADORE your beautiful poem, your sun in a pot and rainbow as the heart of your garden. Sigh. What a lovely visit this has been.

  7. “Have you tried … not being sick?” – have you tried surviving after SOMEONE bashed in your skull to let the stupidity play?

    I think it’s tough for people with healthy bodies (or minds) to understand what certain conditions feel like on a day-to-day level. But I fully expect them to ask, and think.

    • Stupidity lobotomy. I like it.

      Closed mouths and ears rarely feed the brain. It’s just a shame that too many times what comes out of some people’s mouth is pure crap, which ends up clogging their ears.

  8. OK so what does pooh have to do with awesomeness??? Everyone does it (the pooh, unfortunitely not the awesomeness)… just sometimes I wonder WTF is wrong that people think they can judge others, please give me interesting with pooh, rather than f-ing boring as waiting for a rocking horse to shit, up themselves, chronic A-holes that think their crap doesn’t even stink!!!
    OK Friday night in Oz… and yes I am sipping on a wine 😉

  9. I am with you 100%!!!!! I think that goes with everything! Like me and my hair! I know, it is nothing compared to people with illnesses, but I know many people can’t believe, I have cut my hair, stopped dying it and I am showing myself proudly. It’s like get over it people! I love the top of my head and I am wearing it proudly! If you don’t like me and my head, then go away! I don’t want you around me!
    When you have an illness, you for sure want people around you, that will not only support you, but understand what you are going through!!!
    Love you my friend!!! Big Hugs!

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