Ehlers-Danlos Syndrome

Illness Army: “Litany of Positivity Porn”

 

All that negative stuff isn’t healthy. You just need to move on. You just need to think positively. You need to stop perceiving that darkness. Maybe you should pray to god. I don’t know why it’s like that, but there are people worse off. You’re not the only person like this, you know. I don’t know why you’re being so dramatic. I’m sorry I can’t handle all your sadness anymore. At least it isn’t cancer. You can still walk though. Why do you always talk about this? Why can’t you just talk about happier stuff? You should get out more. You should exercise more. Buck up, it’s not that bad. You just need to pull yourself up by your boostraps. You’re fine. Stop worrying. Maybe you need a vacation. When are you going to just let it go?

Stop.

But they mean well, you should just appreciate their positive thoughts. You just need to thank them for their prayers and good vibes. They were being nice. You’re just making a big deal out of nothing. You’re so ungrateful.

Your intention is irrelevant, if not selfish. You’ve exploited the sick with your brand of “empathy”. It’s fake. You may tuck yourself in carefully to get a good night’s sleep, but this culture is a gimmick. It’s a cop-out.

Seriously, your silence would be better appreciated. Didn’t your mother ever say if you don’t have something nice to say, you shouldn’t speak at all? Your positivity porn is tired, it’s old, and I’m over it. You’re trying to minimize, marginalize, dismiss, invalidate – move on because that will not be accepted.

My dearest chronically ill friends – that is what you need to say if anyone should ever utter a word of their positivity or inspiration porn. Don’t get me wrong, a healthy dose of positivity is important for experiencing the spectrum of human emotions. Happiness cannot exist without sadness. Grief does not overwhelm without ecstasy. Calm doesn’t breathe without anger swelling on the other side. We are a culmination of these experiences. Each emotion, each experience, each feeling and attitude has a place and should be weighed when we consider the human condition.

And please don’t mistake this as me saying that pain equals strength because that is not the case. There people who have moments of strength and weakness, with and without pain and illness.

But this culture of positivity needs to stop.

It is preventing legitimate strides toward a more equal foundation for the chronically ill and in pain and disabled. People are prescribing happiness in the place of medicine. Medicine that is supported empirically and scientifically. It’s intended as a placebo. A dose of sugar on our shitty lives. But we can stop it. We are sick and we are in pain, but we have a voice. Our voice matters. We are relevant. We are human beings and our health isn’t inconsequential. We are not collateral damage to a misguided drug war, or political mismanagement. We are in pain and we are exhausted. But we have the right not to be, as much as able.

Talk about it. Do not accept positivity and inspiration porn. Positivity isn’t a cure for genetic disorders. It can’t fix a congenital brain condition. Call your friends, family and doctors out on it. Correct them. Set those boundaries. And never accept less. This is critical. Do not sacrifice your mental, emotional and intellectual safety for that. Intention is irrelevant in this context. Your well-being is not.

Thank you to the author of this blog for submitting her story. You can find Shiloh at http://salvationisadhoc.wordpress.com
Shiloh is a college student and zebra with EDS-HT. She believes that the power of words can connect humans in an intimate and meaningful way, and that’s what her aim is to do with her writing.

If you have a post that you’d like to see feature on Illness Army, check out our Submission Guidelines Page.

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Illness Army: “Diagnosis of Chronic Illness”

Diagnosis of a Chronic Illness…

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
  2. You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
  3. You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
  4. You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
  5. You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
  6. You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
  7. You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
  8. You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
  9. You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
  10. You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.Diagnosis of Chronic Illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.

The author of this post is a new blogger, Nicole, who can be found at http://enduranceandoptimism.com/

Her blog was created to help support others suffering Chronic Illnesses and to get her own stresses and frustrations out. As her blog is relatively new, I suggest following Nicole and having a read of her posts!
I personally welcome her to the Chronic Illness Community with open arms.

If you have an illness post that you’d like published, please check out our Submissions Guidelines Page.