Chronic Illnesses #WhatYouDontSee

6:00:00 PM

Over the last week or so, I've seen a lot of posts using the #WhatYouDontSee . It honestly makes me really happy. Not because people are going through these things, but because their voicing the things that they're going through.

So many of us in the chronic illness A.K.A. spoonie community, are going through things that we wouldn't wish on our worst enemies. We deal with both visible and invisible illnesses and it is incredibly difficult. It's especially difficult when society treats us as liars just because they can't see our pain.

Right now, the biggest story regarding the #WhatYouDontSee movement, is the one where Kristen Bell talks about what it's like to live with anxiety and depression. I struggle with both and it's reassuring knowing that someone is able to use their voice to educate others. It's part of the reason that I started this blog. I know that I don't have the audience that Kristen Bell does; but the more people that talk about the issues, the more we'll be able to inform society as a whole. It's important that each of us does our part.

In the BuzzFeed article, Kristen Bell talks about her struggles with these mental illnesses, how she's learned to cope, and that she even takes medication to help herself. There are so many people that are afraid to get help and afraid to take the appropriate measures to help themselves because of the stigma relating to mental illnesses. What people need to understand is that these illnesses, both mental and physical, are not our fault. We don't make them up for attention. We continuously struggle with these things for our entire lives. We can't just make them go away and a majority of them don't have cures.

I've been pretty open about my health issues. I have more than a handful and I even had a heart procedure last week. I struggle with both mental and physical illnesses, but I try not to show my pain. My husband sees a lot of what I'm going through, but not even he sees everything. There are a lot of reasons we're afraid of being open and honest with others, especially able people. If it's not for embarrassment or guilt, it's usually because of fear. There are people that harass young spoonies because they don't believe they could possibly be sick or they don't see it. There are people that harass those that use handicap parking because they don't look handicap. That right there is the main reason I've been so afraid to use the wheelchair that I know I need.

Our illnesses don't need to be visible to treat us with respect. It doesn't matter if I'm 80 or 21, if I need a mobility device or a closer parking spot then I need it. No one has the right to argue with me about that. I mean honestly, would a doctor sign the paperwork if it wasn't true? What bothers me the most is that people think we're faking our symptoms! How could someone possibly think I would put myself through this just for a closer parking spot? The energy it would take to fake my pain is far more than the energy it would take to walk through a parking lot. I just don't understand how people can treat spoonies the way that they do.

To better help friends, family, and the rest of society understand what spoonies go through, I've decided to make a list of things that they don't see. These may not apply to all spoonies, but they apply to me.

  • how powerless I feel in my own body.
  • the thoughts and emotions that continuously run through my head.
  • the panic attacks I have from the littlest stressors.
  • the days that I spend on the couch because I don't have enough energy to move.
  • the number of hours I avoid going to the bathroom because I don't know if my legs can carry me.
  • the amount of pain I'm in daily.
  • the number of times I wish I could go back to before my first diagnosis.
  • how many times I've broken down because I can't complete the simplest tasks.
  • the number of times I cry because I've had to give up work, school, and my dreams. 
  • how many times I've broken down because I can't do what I used to be able to do.
  • the number of times I've been pitied. 
  • how I force myself to shower after spending four days on the couch. Not because I have enough energy, but because I feel disgusting. Only after I get in the shower I have to stop half way and sit on the cold tile so I don't pass out. 
  • how I have to fight the suicidal thoughts that hit me daily. 
  • how I have to constantly defend the idea of staying alive because I feel guilty for those that care about me. 
  • the looks I get for carrying around all of my required medications and my medical binder.
  • the number of doctors appointments I go to, but don't receive answers.
  • the amount of times that I want to quit because there's no cure.
  • the tears that fall for reasons even I can't figure out.
  • how many times that I've had to cancel plans because I can't even get out of bed.
  • the amount of work it takes to remember all of the medications, appointments, and medical information that comes with each diagnosis. 
  • the judging comments I get for having a medical binder, but there's no way for me to remember everything in it. Especially not with brain fog. 
  • the number of times that I wasn't even invited because they though I'd say no.
  • the amount of times that I'm reminded that I won't ever have kids.
  • how frequently I have to try and accept the things that I can't control.
  • how often I feel completely useless.
  • the fear that overcomes me when I start getting sick or add on another symptom.
  • how I am forced to accept the probability of getting a terminal diagnosis.
  • the fear that I might have cancer, but my nodules are to small to test. So I'm forced to wait and rescan in 6 months, and then repeating the process. 
  • the number of nightmares I have; whether they're from the PTSD or the constant fear of my illnesses.
  • how hard it is to plan a future when you don't know if you'll be there for it.
  • the guilt I feel for asking for help.
  • the number of times I fake a smile or say I'm good, because I don't think anyone wants to hear the truth.
  • how many doctors we go through before one takes us seriously.
  • how many days it takes to recover from going on an errand.
  • the fear that comes with being honest because people just don't understand.

I'm sure I could go on forever, but I'm going to stop for now. There are so many things that spoonies have to deal with and the rude treatment of others shouldn't have to be one of them.

I've gotten pretty personal in this Spoonie Saturday post, and I'm honestly kind of scared to publish it. However, knowing that this might help one spoonie not feel alone or one able person to understand just a little bit better, reassures me that this needs to be posted. If you're interested in learning more about the spoonie community, you can find the rest of my spoonie posts here.

Please share this post in hopes that it will help someone!

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