Health

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.

E

“You’re not alone, you’re with me”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s