- baileconsazonMe in public vs me at home. Only people who suffer from #chronicpain and their caregivers can understand this.
Thanks for sharing @chronictoughcookie ❤❤❤
#LoveTonya #Spoonie #fibromyalgia
#Fibrofighter repost from @chronictoughcookie
So let's talk stigmas. 🔎
These are two representations of my nerve pain. The only difference is how much I'm allowing myself to show. Don't assume someone's health/happiness by their smiles, because for me...
sometimes I'm happier and even healthier when I'm home alone and can finally stop smiling through it.
When you have a chronic illness, it's easy to be convinced you are the embodiment of a burden. The idea of hiding your pain to avoid judgment, disbelief, pity, accusation, or name calling like "attention-seeker", is a daily reoccurrence and often rationalized in your own head to avoid wasting your limited energy on fighting stereotypes.
Talking about being sick is a double edged sword. If you act sick, you're not strong. If you don't act sick, however, you lose credibility. Both scenarios end with being misunderstood/alienated.
Sick looks different for everyone. I have an invisible nerve disease with many different triggers. This year it has ranged from a bad car accident, to a long head cold, to eating a raisin. The problem in this society is that you can't be disabled unless you're completely optimistic. You can't be sick unless you are an inspiration to the healthy, and being relatable to the sick isn't enough. People don't want to hear your story unless you're teaching them a lesson about their own lives, and even then they want the beginning/end version without the gritty middle years that makes the meat of your narrative.
Every time I post I have two choices: I can either
1) sugarcoat my words, inspire/motivate to ensure the respect of the healthy, yet risk my feeling like a fraud to the one platform I use to communicate with my chronic illness community,
or 2) be truthful, relatable, yet risk the judgments of the ignorant who don't have chronic illness etiquette.
After years of sugar coating my illness for others, I decided to make a third option. To educate, motivate, AND relate...
- hannielinaEverything said here is very true, know it for personal experience as well. A very different chronic illness but have noticed the same issues when talking about it. I have a huge respect for your attitude and the way you are able to reflect, and as you said motivate, educate and relate. Ur a 💎💎💎❤❤
- baileconsazon@hannielina this was @chronictoughcookie who wrote this, and she is an awesome inspiration! Do you have a chronic illness too? In my experience, dancing has been a HUGE help.
- chronictoughcookie@hannielina ❤️❤️❤️ keep up the positivity!! I'm so glad we aren't alone in this- that's the mission!
- hannielina@baileconsazon yes, dancing is the best ❤
- chronictoughcookie@baileconsazon I'm so glad that this resonated with you! Im so sorry that you have to relate to this, however. Im happy you are showing our chronic illness peers how important it is to be their authentic, sick self! Keep fighting! You ROCK! ❤️👌🏻💪🏼💕 I feel your pain, love.
- chronictoughcookie@hannielina I'm sorry you relate to this but I'm glad you can push past the stigmas! DANCE AWAY 💃🏼💃🏼 that's the best medicine sometimes!
- baileconsazon@chronictoughcookie it really did. Most times I'm so much happier at home where I don't have to put on my happy, cheerful face all the time. It is hard work putting my game face on for long! But sometimes, I love it. Like when I'm dancing and teaching. And those lovely dance endorphins take the edge off. You keep doing your thing, Lady because you are inspiring people. ❤❤❤❤😙😙😙😙😙
- anitasag1That's me too! 😣😣😣😣
- baileconsazon@anitasag1 Weezy, get your dance on!
- jennai0ismail"The reason why we struggle with insecurity is because we compare our behind the scenes with everyone else's highlight reel." Aka fuck what others do, do u.
- londonthrillsLove your photos!!