When I am introduced to someone new, the words and phrases people use to describe me make me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors and surgeries. They now see me as the girl with chronic pain. And it makes me feel like I need to push myself harder, when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.
My illnesses are not usually fatal, and sometimes it feels like if you are not in danger of actually dying, people don’t feel the need to use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a chronic illness they know it is most likely going to “drag on” forever. From my experience, it can be hard to get people to support you if you are going to live with your disease forever and if there is no cure.
People with chronic illness often face a lifetime of pain, exhaustion and disability. A lifetime of people telling them to get over it and they they are too depressing to be around, along with failing to meet everyone’s expectations. It is also hurtful how family and friends can’t seem to understand how we can be fine one minute and then the next we are curled up on the couch in pain.
I know for some of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.
Once you finally have a name for what is “wrong” with you, it makes it much easier to treat, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgment; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you.
But then there are those who search Google and find places that, for a one time payment can “cure” your disease — or this new medicine on the market with amazing reviews online for being natural, articles by people who have “cured themselves completely using ____,” or how thinking positive and talking about your feelings you can convince your body you don’t have an illness and can therefore “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing, because the internet says it will help you.
I have lived with my illnesses for a little over a decade now. Wow. 10 years. In that time I have come across others in support groups and online forums who sometimes say they wish they had a condition people were more familiar with or took more seriously. Most chronic illnesses have no cures, only treatments, and some people just assume it will be the same thing every day, so why bother helping if it is going to be a never-ending process?
For me there are not any words on the planet to adequately explain how difficult it is to live with an illness that no one believes is real. For people to not understand how you can look fine and be smiling on the outside, but be hurting on the inside. For people to not understand how you can do a certain amount of things one day, then the next have no energy to do anything; sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain.
Not to mention many of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.
We are people first. We are still human beings who have feelings. It’s hard when people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is hurtful for many of us. We just want some understanding. Some support to know we are not alone. I could really use some support, as I am going through this difficult part of my life. I do everything I can to be supportive of family and friends, even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?
For those of us with chronic illnesses, many people come to the conclusion that we are different, and we will never be like them because we have a different life then they do. Many people assume we will never want to hang out because we hurt all the time. So they stop asking us to go out places. They stop calling.
We fight every day just to get out of bed, while many others take the little things for granted. Many people think that because life is the way it is for them, it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to bars, have a “normal life,” have a relationship. Not have to worry about every minute of every day and how it will affect you and your ability to do even the simple things.
My name is Karley and I live with chronic illness. I am a person first and foremost. I have a name, and I am more than my symptoms. I refuse to let my illness control my life and how people see me. I am doing the very best that I can with what I’ve got
There’s only so many times you can say you’re in pain before people stop listening. After all, its Chronic. Never going away. Life long pain.
So when I stop complaining of my pain and make it sound like its no big deal, it doesn’t mean my pain is any less than normal. It doesn’t mean I don’t feel like I got run over by a truck or that my body isn’t on fire.
It just means I’m trying to be stronger. Trying to take it day by day. I don’t have another choice.
I’m still in pain. But I’m pushing through. I can do this. I have to.
And I’ll do it without complaining because I understand how annoying it can be.
It’ll be a lifelong journey and there’s only so many times I can say the same thing a million different ways.
I was asked to write a piece for a friend’s blog about what anxiety looks like for me. I really dug deep and have learned a lot about my anxiety and would like to share it with you all so maybe you can better understand this part of me.
My name is Tiffany. I am 31 years old and I am a fulltime retail clerk. This is the first time I have sat down and wrote descriptively about my anxiety. Just writing this is overwhelming because it is really suffocating to explain how much weight I carry on my shoulders. I will do my best to describe how anxiety effects me. So what Anxiety feel like to me? A constant supply of nervousness and racing thoughts about the past, present, and future. Rerunning scenarios over and over in my head, trying to anticipate every possible outcome and how my actions, and the actions of others can influence the situation. These scenarios can be large major life altering events or something as small as what to wear or when/how to perform basic daily activities. I not only stress about activities but people as well. Anyone I encounter whether I have an actual relationship with or not, I stress about. Those whom I care about more, I worry about more. I find myself always expecting the worst of and for them. I invision horrible scenarios in which I lose them, both as a friend and as extreme as death. Anxiety is felt physically as well as emotionally. Anxiety is exhausting because my mind is always racing, even in my sleep. I never feel fully rested but I can’t just relax because there is too much to worry about, therefore I have stress dreams rather than restful sleep. It’s hard to focus and be present because my mind is always somewhere else worrying about something else. Anxiety also causes me diarrhea, gas, and frequent urination, which then in return causes me to stress about restrooms (availability, cleanliness, being noticed for frequent trips to the restroom, farting, burping, accidents, ect). I have nervous ticks such as, curling my toes, clinching my fists, jaw, pelvic floor muscles, shoulders, and sometimes other muscles as well, fidgeting, scratching, picking at my skin and nails, rapid eye movements, tapping my feet, biting the inside of my cheeks, licking my teeth, inability to sit still, ect.. Different situations trigger my anxiety and bring out these ticks more. Heightened emotions, stressful situations, driving, unforeseen scenarios, unfamiliar places and people, doctor appointments, Holidays, silence, and big crowds are my major challenges. The physical effects on my body are exhaustion, hot flashes, itchiness, sore tight muscles, very short fingernails from picking them, wounds on my skin from picking and scratching, and mouth sores from biting my cheeks. Panic attacks for me amplify all the physical and mental symptoms and tend to leave me completely exhausted and I am useless for the rest of the day, if not longer. I tend to avoid anxiety inducing activities and find myself canceling plans, missing appointments, and avoiding people because I just can’t get control of these thoughts. Medication and therapy has helped me gain some control over my anxiety. I do lots of meditation, mantras, breathing exercises, sensory and grounding activities, and self help workbooks regularly to help combat it. I am able to work, take care of myself, and care for others as well. I look normal and healthy on the outside and am a friendly, social, and a high energy person, which constantly fights against my anxiety. I enjoy dancing, concerts, festivals, group activities, hanging out with friends, playing with children, and shopping. I am always trying to suppress my anxiety so I can still partake in the activities that bring me joy. Most people wouldn’t know that I have anxiety because I hide it well as a defensive mechanism, to protect myself from judgment and pity from others. Although anxiety appears to control my life, I feel that I still live a fulfilling life complete with fun and exciting experiences, supportive and healthy relationships, and a future with endless possibilities!
There you are back again pulling the rug right out from under me. You invade my thoughts, my dreams, even my life when I am awake.
You are always there. Watching. Waiting. Trying to get me to slip up and take solace in the sweet words you whisper as I sit there staring, trying to fight it with all my heart.
I HATE You. This is not who I am anymore. You may have had a hold on me, always pulling me down till I thought only pills and getting high was the answer. But guess what? No more.
I played into your hands for years. You almost destroyed everything I care the most about in the world. My family. My relationships. My friendships.
I almost lost everything because of you.
Oh, it’s my fault, you say? You are partially right. But you are also wrong. Yes, I chose to do the things I did, but you were the one whispering the ‘sweet nothings’ into my ears late at night.
You, dear Addiction, do not have a hold on me anymore. Yes you will always be there, but I know now that I do not have to listen to you. I am stronger than this. I can beat you.
You laugh at me, the sound echoing in my head. Saying I will never be free of you. That I will always be back.
But I won’t. I have something here that you can never match. I have a wonderful family. I have a amazing understanding boyfriend. I have the strongest support system I could ever ask for.
So, my dear addiction, you and I are done. For good this time. And the best part? When I feel you trying to pull me back in to the darkness I used to consider my friend, I will have 1,000 friends and family pulling for me here.I am not alone. But you are now. Enjoy the darkness, my old friend.
1. Do you put ketchup on hot dogs? No. I can’t stand Ketchup ever since I was a kid and used to apparently sit in the middle of the table and drink it 😝
2. Choice of soda? Dr Pepper
3. Do you put salt on your watermelon? YES. And pepper sometimes
4. Can you swim? No. But I can float on my back
5. Hot dogs or burgers? Burgers
6. Favorite type of food? Chicken Nuggets or french fries 🍟 (My brothers Grandma told me that when I was a kid I would see the golden McDonald’s arches and say “French Fries” in a deep voice and laugh hysterically.
7. Do you believe in ghosts? Yes
8. What do you drink in the morning? Water
9. Can you do 100 push ups? Not anymore 😆
10. Favorite season? Summer
11. Your favorite animal? Dogs
12. Tattoos? Yes, two.
13. Bumper stickers? If I could drive and had a car, absolutely 🤣 but I can’t even take my permit written test until I’ve been seizure free for a year and I had reset my ‘seizure free days’ tonight
14. Do you wear glasses? Yes
15. Do you have a phobia? Way too many
16. Do you have a nickname? Yes
17. Rain or Snow? Rain. I always joke that I should follow the birds “wherever they go for winter.”
18. Can you change a tire? Yes
19. Favorite flower? Those rainbow colored daisies 🥰
20. Can you drive a stick? I used to know how
21. Ever go sky diving? No, but as much as I hate heights, it’s still something I’d like to try some day
22. Kids? Hopefully someday
23. Favorite color? Blue, yellow, (Yes, minion colors. BUT they’re also my illness Awareness colors) anything bright 🤣
24. Can you whistle? Yes
25. Where were you born? Oregon
26. Surgeries? Too many to count
27. Shower or bath? Bath- with everything going on with me, I now need help if I want to shower. And while some people may not see the issue, I’m 26. I should be able to stand up without a shower chair or those extra handles you can attach to the shower walls so you have something to hold onto.
28. Last song you heard? Lady by Brett Young
29. Broken bones? Once
33. How many TV’s in your house? 1
34. Worst pain? When I had my shunt removed 6 years ago.
35. Do you like to sing? Yes, but I’m not very good at it. My for dogs son however loves it and will sit there with his head on my arm and stare up at me like starstruck and he’s a dog.
36. Are your parents still alive? Yes
37. Do you like to camp? Yes
38. What do you binge? Medical shows, books, anything I like or looks interesting.
Wrote this at 10pm last night and as I still haven’t been able to sleep, I guess I’ll post this now 🙃
POSSIBLE TRIGGER WARNING. I have included some pictures to show you better what I’m dealing with and while they’re not innapropriate or anything, they definitely aren’t pretty.
10:20PM and I’m having the full body shakes/tremors and along with the dizziness, I’m having to use the voice to text thing because I literally can’t hold my phone, so I’m sorry if this isn’t coming out right 🤣
I know there’s only so much doctors can do till I see a Neurologist, but the last few days have been even worse than normal and honestly I’m terrified to do anything.
I spent all night and till about almost 7am dealing with what I can only describe as waves of hot goosebumps, random jolts from my head through my entire body down to my toes. Literally. Waves of dizziness, tingling from my head down to my toes. Full body shakes. And on and on.
My boyfriend ended up literally picking me up off the couch when he heard me crying on the couch because I couldn’t move and we walked like penguins from the living room to my bedroom where he tucked me in and I finally got some sleep thanks to the heavy duty sleeping pills I was thankfully prescribed that knocked me out.
My doctor is reaching out to other Neurologists in the area with the hopes of getting me in before this gets worse or Christmas comes, but so far no one has a spot open.
He says he’s concerned, BUT he’s not in the ‘freaking out’ stage as of yet 🤣
Well, that’s nice. But it’s not happening to him. As for me, mentally, emotionally, and physically, I’m really struggling to do even the basics of living.
Could really use some help in the form of memes, funny videos, anything to get my mind off what’s going on, even for a few minutes.
I have very few people in my corner, but the ones I do have? I couldn’t ask for better people ☺️😘🤟 You know who you are, and I can’t ever thank you guys enough for just being here for me, even just through a phone. Means more than you know.
Hey, everyone. I know I’ve been MIA for…way too long. But. slowly, I’m trying to come back. To writing. To ME. To someone who knows now that struggles can and do make us stronger. To become someone my Grandma would be proud of.
There is so much to update on, but, as of right now, I do not want to get into that. Not right now. But I would like some good thoughts, vibes, prayers my way if possible ❤
But I WILL say, music has ALWAYS been my go to, other than writing, to work through some of the hardest “storms” of my life. While I was battling yet another “storm” and was battling my own personal demons along with it, I came across these two songs and I will admit it, they did make me cry. They both have such a meaning to me now.
If you have a topic you would like to see featured on here, feel free to contact me on any of my Social Media Sites and I will write about it for you 🙂 I also take requests for quotes and you can see my gallery of quotes I’ve made here
Reach out, you never know who may be touched by you. Your words may be just what they need to make it through a rough day.
I promise if you reach out to me, I will always be reaching back. Because no matter what your brain or other people try to tell you, You. Matter. Always.
I was listening to the radio one day and they started talking about labels and how people see each other and it really hit home with me so I wrote this blog post which happens to be my most popular post and the first post shared worldwide on The Mighty and IC-Today!!
This blog post was hard for me to write but its also the post that got me some amazing opportunities like being a contributor for Chronic Illness Bloggers (You can see my listing on CIB here) and I just partnered up with Antidote which you can read more about in my recent post here
“No one really talks about what happens if you’re sick and you don’t get better but you don’t die either. You get to live in the margins because its either/or- you’re getting sick or you’re getting better. There’s no in between in our culture. No room for the chronically ill.
-Unknown
Since being diagnosed with Interstitial Cystitis, Endometriosis and Pelvic Floor along with Depression and Anxiety, I feel like most people have stopped seeing me. They seem to only see the disabled girl with Chronic pain and diseases that have no cure.
When I am introduced to someone new the words and phrases people use to describe me makes me feel small. They make me feel like I am not doing enough to “make myself better.” When they talk about me, they only seem to see the endless stream of tests, doctors, surgeries. They have stopped seeing me and now see me as “The girl with Chronic Pain.”And it makes me feel like I need to push myself harder when in reality I already push myself beyond my limit every single day just to try and have a sliver of the life I once had.
My illnesses are not usually fatal and sadly I’ve come to realize that if you are not in danger of actually dying then people don’t feel the need to help you or use their own energy and resources to help you. This may sound harsh, but I am finding it to be more and more true. When most people hear that someone has a “Chronic Illness” they know that it is most likely going to “drag on” forever so there is no reason to try and help you if you are going to live with your disease forever if there is no cure.
People with chronic illness face a lifetime of pain, exhaustion, and disability. A lifetime of people telling them to get over it, of people telling them they they are too depressing to be around, a lifetime of failing to meet everyone’s expectations, but that is not enough to attract anyone’s attention. Nobody would ever tell a cancer patient to just get over it and stop dwelling on their illness, but people with chronic illness hear this practically every day and that is ridiculous. It is also very hurtful to hear and some of us hear it over and over from our family and friends who cannot understand how we can be fine one minute and then the next we are curled up on the floor or the couch in pain.
I know for some of the best people I have ever met, those who have struggled with not having a diagnosis for years, finally having a name for their symptoms and illnesses is incredibly validating.
Once you finally have a name to what is wrong with you, it makes it much easier to treat it, or at least manage your symptoms and pain. But along with the names of your illnesses and symptoms also comes judgements; at least it does in my life. Some people research your illness and learn at least a little about it so they can help you deal with the emotional part of it and be there for you but then there are those who search google and find places that, for a one time payment can “cure” your disease, or this new medicine that is on the market that has amazing reviews online for being natural or articles by people that have “cured themselves completely using ____” or how thinking positive and talking about your feelings you can convince your body that you don’t have an illness and can therefor “cure” yourself. But then they get upset when you don’t read all the “research” they did or do everything they think you should be doing because the internet says it will help you.
I have only had my illnesses coming up on 5 years, but in that time I have come across so many others in support groups and illness forums that sometimes say they wish they could have a disease like cancer because people with cancer get support from family, friends, even sometimes people they just met. People seem to care more about cancer and they don’t care much if at all about chronic illness because it will go on forever. It’s Chronic. Most Chronic Illnesses have no cures, only treatments so some people will just assume it will be the same thing every day so why bother helping if it is going to be a never ending process?
For me there are not any words on the planet that adequately explain how difficult it is to be disabled by an illness that no one believes is real. For people to not understand how you can look fine on the outside and be smiling but be hurting on the inside. For people to understand how you can do a certain amount of things one day then the next have no energy to do anything, sometimes even getting out of bed is a challenge. For people who can’t understand how you can be fine one minute then the next you are in severe pain. Not to mention the insurance companies will pay for cancer treatment, they won’t pay for most chronic illness treatments or medications. Most of us have to come up with the money out of our own pocket to pay for a medication that may help a tiny bit or not at all.
We are people first. We are still human beings who have feelings and hate that some people have stopped seeing us as a person, but now see us as our illness or our symptoms. It is very hurtful for many of us. We just want some understanding. Some support to know we are not alone. I know my expectations of family and friends can just be silly, but is it really too much to ask for some support even if they don’t believe that I am sick? I could really use some support as I am going through this hard part in my life. I wouldn’t wish my life on anyone, and I do everything I can to be supportive of family and friends even if I don’t agree with their lifestyles or choices. Is it so hard to expect them to extend the same courtesy to me?
The words people use to describe others are important. Based on descriptions and words from other people, when you meet someone new you usually have already formed an opinion based on what others have told you about them. For those of us with Chronic Illnesses, most people automatically come to the conclusion that we are different, that we will never be like them because we have a different life then they do. Most people assume that we will never want to hang out because we hurt all the time. So they stop asking us to go out places. Stop calling. Because in their mind we are disabled, therefore we spend all our time sleeping or trying to feel better. They have already made up their minds about us based on one word. Disabled.
They fail to see how hard we try to still have even a tiny fraction of the life we had before our diagnosis and symptoms started coming around uninvited.When they hear the word disabled most people assume that we sleep all day, don’t get anything done, never go anywhere. They never bother to ask us what our days are like, because what they know about disabilities is what the internet has made us seem like to the outside world. Lazy. Selfish. Attention seeking. Pain pill addicts.
It never occurs to them that if they bothered to even look up our illnesses that we can still do a lot, just not all at once. Hearing the word disabled used to describe someone, most people immediately think of someone in a wheelchair or someone with severe limitations in their movement and their lives. When they see someone like us who looks fine on the outside but still ‘claims’ to be disabled, they get this look on their face like we are horrible people because we are ‘lying’ about our illness. They don’t understand how can we be sick if we look fine on the outside. Society has made us ‘disabled people’ seem like we are just wanting money and free medical care and pain medications from the government. And its rare that someone actually tries to form their own opinion of us instead of believing the internet or the opinions of others that claim they know more about our diseases than they do. They believe the internet or other people because it is easier than getting to know us and trying to form their own opinions of us. It is easier to just believe what they are told rather than having to spend time with us when they ‘have better things to do’
We fight every day just to get out of bed while they take the little things for granted. Most people think that because life is the way it is for them that it will always stay that way. They never think of what would happen if all the things they were used to suddenly weren’t around anymore. They are used to going places all the time, feeling healthy, being able to go on long road trips, go to the bars, have a ‘normal life’ Have a relationship. Not have to worry about each and every minute of every day and how it will affect you and your ability to do even the simple things that they do without even thinking of it as a challenge. For them, that is just the way it is for them. They never think life would be any different.
What would they do if one day they woke up and they were suddenly sick with a chronic illness and their whole lives were about to change forever? What would they think if one day they suddenly could no longer go places without planning for every minute of it? Or having to start taking many medications? Of their friends who suddenly walk out of their lives after learning of their new life? Of feeling exhausted 24/7? Of needing a wheelchair? Of needing support to walk up a flight of stairs or even just a few steps? Of not being able to do even the simplest of things they used to do before they got sick?
They judge us each and every day. With their words. The looks. The whispers and the giggles as we struggle to walk upright or walk funny due to our pain. If they woke up one day and their whole life had changed, would they finally see that we are people too? We are not just The Disabled People.
We have feelings. We matter too. Just because we are different it should not make us ‘outcasts’ in the eyes of someone ‘normal’
We fight every single day just to get out of bed and put on a brave face. We do the best we can with what we have. There are people in my life that do not think of the hurtfulness of the words they use to describe me. I am not just the disabled girl they know. I am a person first. My illness is not who I am. It is a part of me, but it does not mean that I have to let it control me.
My name is Karley and I suffer from Chronic Illnesses. I am a person first and foremost. I am not the disabled girl. I have a name and I am more than my symptoms and illnesses. I refuse to let my illness control my life and how people see me. If they cannot see past the disabled parts of me, they have no right to be in my life anymore. I am a person. I have feelings. My illness is not who I am. I am stronger than my disabilities. I am doing the very best that I can with what I’ve got.
Instead of seeing me as disabled or having chronic illnesses that have no cure, try using my name instead. I am a human being. I have a name. or have you spent all of your time being so focused on the labels that surround me and my life that you don’t even know my name?
After writing this post, I made this. Because we do matter. We all do. No matter our limitations or illnesses.
***Please don’t hesitate to contact me about anything I haven’t given up on you even though with how little I’ve blogged in the last few months, you probably think I have. But here’s the thing- you ARE important and you DO matter. Every single one of you.***
I know and am ashamed about how much my postings have gone down hill.
Please be patient with me and know, I AM BACK . I WILL continue to blog , it may just take me a while to get back into the rythum of writing again so please be patient with me.
One of the many reasons I stopped blogging is on April 26th, 2020; my Grandma passed away (if you’d like to know more, just let me know) and I feel like I’m being ripped apart. I have to fight every single day to just get through without the emotional what I call “Word Vomit’ where I basically blurt out everything without thinking, and that usually ends up with me crying. I’m not talking about the normal crying; I mean full body shakes, my nose runs like a river, and then every part of me starts to hurt from the shaking, the crying. The toll crying takes on me is insane. I usually end up needing a nap after because I don’t open myself up to many people.
I tell myself that I can handle it. That the severe exhaustion, the snot bubbles (not really, but go with it) and bawling my eyes out is nothing. That I can handle it myself and don’t have to drag someone into the hell that is my life.
I’m going to stop right here even though I have more to say and because I’m beyond exhausted mentally and physically and I have a date with my bed. But please keep checking back and I will post more later.
.One day at a time. Stay strong and safe, my friends ❤️
The Spoonie Sanctuary 