The Harsh Truth from the Mind of a Spoonie

FullSizeRender 6.jpgI used to be that person that would constantly complain on social media, or to anyone around about how horrible it is to live with migraines. I would post on Twitter, Facebook, etc. every time I was in pain, thinking somebody would care. Nobody ever did. I would still lay in my bed, alone, and clenching my fists in pain. Nothing ever changed.

I complained to my dad that nobody ever cared about anybody who was in actual pain. That people would ask for remedies for what they think is a migraine, or something that a doctor can easily cure, but I’m still fighting in the world alone because nobody ever cares about something that never gets better. So dad told me something that sort of punched me in the chest: nobody cares about anything that doesn’t affect them. Unless they are sick, or it’s something that will affect them in any way, nobody bothers to care about it, especially if it’s an invisible illness. That’s just how society is.

You see, there are very few people who can say that they really truly care about chronically ill people. You get tired of caring after so long: this is something that never goes away, it’s always there to ruin your plans with the person. It’s something that you can’t see: the person doesn’t have a temperature, their bone isn’t protruding from their leg, and their hair isn’t falling out. They show no sign of pain, illness, or if they’re even telling the truth. How do you know they aren’t just asking for attention or wanting the drugs? You have to be able to really and truly trust this person, and a lot of people do not have the ability to do that.

A lot of people just don’t care. They’ve listened to you complain for so long and it’s just boring to them. You never get better, there is no “remission” to celebrate over dinner. It’s something they don’t understand, and they don’t care to understand because it isn’t something that they have to go through. They might ask you if you’re getting better whenever they see you in public to refrain from being that person that makes awkward eye contact and just ignores you as they walk by, and of course the answer is no—it will always be no. It isn’t the flu or a broken leg. Obviously you can’t hold it against them because if you hadn’t caught the bullet in illness roulette, you probably wouldn’t care either.

After dealing with a chronic illness for so long, you might start to develop mental disorders. Imagine being diagnosed with a disease that will affect you for the rest of your life. Imagine getting out of bed in pain, or fearing all day that a flare will occur in the most inappropriate time. Imagine looking forward to something (ex. vacation or graduation) for so long, and suffering through it. Do you see where I’m going with this?

I’m going to tell you something that happened when I was in 11th grade, 2 years after I was diagnosed with a neurological disorder. That year I went through many tests and loss. I became distant from all of my friends, I stopped caring about my appearance, I felt like a hollow shell because I felt like I didn’t deserve to live anymore, I didn’t want to.  I would think of ways that I could kill myself, wondering how many pills I could swallow before I was gone, or how fast I needed to hit a tree to get out easy. The sad part is that wasn’t even the worst of my pain. Obviously I still go through bouts where I just don’t want to exist, I don’t want to be in anymore pain.  I sit up at night and cry, and I know I’m not the only one. There are so many people that deal with mental disorders, and nobody cares until something bad happens. “They’re just asking for attention.” “They’re just weak, everybody goes through what they are going through.” “They don’t know what a bad life is.”

I’ve gone through many friends because of my illness. It’s nobody’s fault but my illness, and I would never blame them because I hate myself sometimes. I wish I had the ability to leave me. People don’t understand what they’re stepping into when they’re involved with a chronically ill person. It’s more than just watching them taking medication: it’s watching your friend suffer, never keeping plans, and slowly drifting away. I wish it was easy enough to just pop some pills in my mouth and be able to go on with my day. I wish I could say that I haven’t cancelled plans, or had to leave early to go home and take meds. I wish I didn’t have people staring at us while I take my pills at the dinner table. I wish I was normal just as much as you.

A lot of people with chronic illnesses find comfort in online support groups. A few I follow on Instagram are @themightysite @youngpeople_chronicillnesses @amigrainelife @chronicpainprincess and @thatdefyinggravityspoonie. They’re all extremely helpful, kind, and supportive. There are so many more for your specific illness that offer remedies just for you. They’ve all helped me so much, whether it be just to give me the support I need to continue going, or helping find relief when I’m in pain.

I urge you that if you have a chronic illness, please don’t just complain about it. Do something about it. Share articles about your illness, share experiences, share resources for people to read and understand. Instead of complaining about it, inform people about it. Be supportive to others with chronic illnesses, because they are in pain too. You know how it feels when somebody actually researches your illness, why not be the light for somebody else? Try to understand what they’re going through. Share the good things, “Heck to the yes! New meds are actually working and today is a good day” People enjoy seeing something other than disappointing news, and your new management might help others in pain too. Most importantly, never give up. Don’t give up on treatments, don’t give up on the good days, don’t give up on yourself.

Also, if you have a mental disorder, please reach out for help. I am always available to talk, because nobody deserves to suffer alone. If you just need to talk, if you want advice, if you need anything, please reach out to me. I will help you figure out a way to get help. I want to help you. You are not crazy, you are not alone, you are not a burden. The world deserves somebody as unique and beautiful as you are, and don’t think there is only one way out of whatever you are going through. You’ve got this, and I will stand by your side as you fight.


“You’re not alone, you’re with me”


Let’s Talk About Asthma

Hi, guys! This is Brittany, you might know me from Ericka’s posts and this is my first one! Although I would like to just talk to you guys about this being my first post and how I’m happy that we’re getting views, but I have come to talk about something a little more close to my heart. That is…. duh duh duh duh…. my asthmatic life.

Before I begin to jump into the spiel about how I live my life being an asthmatic, I wanted to share a story about my worst asthma attack. This is just to kind of shed some light on how an asthma attack can get for me. I emphasize me because this is only my experience, not everyone else’s. So remember, everyone has different asthma, they have different asthma attacks, their experiences are not mine. I do not speak for all of us, only myself. So here goes.

Last semester is where this attack took place (meaning fall of 2016). I was sitting in my last period class doing my work, because I’m one of those people who do their work until the very last minute of class in hopes of not having homework. So I was doing my work and of course there are other people in the class, some could be considered “popular” if you want to go with a movie view of this. Well, one of them sat in front of. It was a guy and everyone knows how guy’s cologne is. It’s strong, really strong. This guy decided to spray his really strong cologne on himself… in front of me… multiple times. He had to have sprayed it at least five times.

At this point, I’m already reaching into my bag and grabbing my inhaler, hoping that I won’t have to use it, but knowing I will. And I was right. As soon as I sat up in my seat, the wave of scent washed over me and my lungs basically decided to forget to work in that exact moment. I walked over to my teacher and calmly asked to step out into the hall to use my inhaler where a huge whiff of cologne wouldn’t chase it into my lungs. I stood out in the hall for just a second to let the cloud of cologne to pass, and then I went back and sat in my seat. There, I realized that the smell hadn’t gone away and I was still very much at risk of having a worse attack. I put my sleeve over my face in hopes of not getting anymore of the smell, but that failed. One, because having a sleeve over my already sparse oxygen supply certainly didn’t help. And two, because pulling the sleeve away from my face would mean that I would have a lungful of cologne, not air. I texted my mom then to tell her that my attack wasn’t easing up and that I was starting to get really dizzy. Before I could even send my message, my eyes got blurry and I could hardly see.

I stood abruptly and basically crashed through the many desks (and my peers) to get back to my teacher, who I couldn’t see, to tell him I needed to go to the office. He saw from my very unfocused look that I was being completely serious, so he told my friend to go with me to the office to make sure I didn’t pass out in the hall. She helped me to the office and I was lucky to have her because I knew from my weakening legs that I was about done for. When I got to the office, I was told that the nurse was not at school anymore and they needed to call a teacher to help. The secretary took what seemed like ten years to call the teacher and get her to help me. I fell into the chair, my legs finally giving out. Through this all, I was actually pretty calm even though thoughts of my lungs just giving up were racing through my mind. The teacher comes, she realizes that I am in fact about to pass out and asks if I would like to call my mom or the ambulance first. Obviously I chose my mom. I didn’t want to go alone in an ambulance. My mom tells them to have my brother take me home, so I can combat this horrible asthma attack with a hot shower that usually helps. And it did.

The reason that I wanted to share my worst asthma attack story is not to gain pity for how my lungs decide they don’t like me anymore, its because this was preventable. I didn’t have to have an asthma attack had the cologne not been involved. I also don’t blame the guy, though most people would. I forgive him for not knowing that my lungs wouldn’t be able to handle that cologne. I don’t tell people that I have asthma, not because I’m embarrassed or for them to tell me that they’re sorry, I don’t tell people because I don’t want to get sympathy. I actually got yelled at once for informing someone about my asthma, I don’t want that to happen again. Asthma isn’t something that someone needs to hide, you shouldn’t feel like people will yell at you for your asthma. So remember, you don’t know who has what, if you feel like someone with normal lungs wouldn’t be able to handle this smell or whatever, simply don’t use it. You don’t know if they have asthma, allergies, migraines, what have you.

But anyway, to the guy with the cologne, I forgive you. How could you have known? I didn’t tell you, though I’m sure everyone in the class that knew told you afterwards, you couldn’t have known. So I forgive you.