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 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.
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.
So after receiving two requests for this repost, I’ve decided to share this article once again. If you have any requests on topics you’d like to see or have me repost some of my earlier work, you can contact me at thespooniesanctuaryblog@gmail.com or at About Us Page
The only predictability with my illnesses is how unpredictable it can be at times. 7 years into my Chronic Illness Journey and still my body continues to surprise me with all that can go wrong in a matter of moments.
It’s inevitable. No way around it. There comes a moment when I meet someone new and have to make the decision of whether to tell them my story right away; the good, the bad, the ugly or whether I will choose to hide my story for as long as I can because I want to be known as something other than “The Sick Girl.”
This is a daily battle I have with myself every single day. Do I tell my story and hope they stick around after hearing all of the brutally honest descriptions that make up my Chronically Ill life? Or do I want to live as ‘normally’ as I can for as long as I can before the inevitable happens and they slowly start pushing themselves out of my life because they can’t deal with the mess that is my Illnesses?
I know that eventually my story always comes out. Sometimes it is planned, while other times it just comes spewing out all at once and I am left with them staring at me with wide eyes and their mouth gaping open. I have told my story so many times online and face to face that sometimes, I think seriously about printing out fliers so I don’t have to explain myself all over again.
What most people don’t understand is that when I do decide to share my story, when I decide I can trust them with the hell that is my life, the medical/physical part of managing my illnesses has become easy over time. It’s systematic. Routine.
It’s everything else about my story that is hard.
Cancelling plans because you can’t get up out of bed from the pain. Not wanting to explain that you can’t go out to eat because you don’t want to be the wierdo that embarasses whoever you are with that tells the waiter all the stuff you can’t eat, and you can’t go to a bar either because alcohol tears up your guts. Not even wanting to have friends over in case you have to deal with unexpected symptoms which leads to them having to leave early or not hang out at all. I’ve cancelled plans so many times now that people just stopped inviting me places — and I don’t blame them. It’s sort of a relief.
You never know how much to reveal about your illnesses to the people you spend any amount of time with; some will be sympathetic and understanding, others will see it as a weakness. Your friends and sometimes even family might be supportive at first, but will grow frustrated over time and start putting up a wall between you and them until you just don’t talk anymore.
It’s hard to keep telling them that you’re sorry, but you will have this thing for life. You will cry to them over and over, apologizing for letting them down. Trying to make new friends is a nightmare because you’re not sure what to tell them: I have these incurable but non fatal diseases and my symptoms can be unpredictable and brutal at times but please don’t be scared to be around me.
You will cry wondering what kind of life you might have had if you didn’t have this thing inside of you. tearing you up from the inside outYou’ll have nightmares about getting your colon removed and living with an ostomy bag. You’ll pretend you don’t want kids because the fear of passing on your diseases is too great; the guilt would bury you alive. You’ll be positive and brave on social media; your friends will tell you that you’re an inspiration.
Would they say that if they knew you spend some days holding your breath under the covers? That you feel like you live on another planet — one they can’t come to but you can’t leave? That you’d like to sink into a haze of hospital-provided opiates and never return until there is a cure for your incurable but non fatal illnesses?
I’m alive and I have three incurable and yet non fatal diseases that won’t go ever go away. This is my reality.
This is also my reality: Living as honestly and as thankfully as I can. Scribbling in a daily journal, even if it’s one line that says “today is just okay.” Giving back to people who have it much worse than I do. Enjoying every bite of food I’m able to eat. Trying not to worry so much about my appearance or desirability to society. Watching people on the sidewalk and imagining happy lives for them. Connecting with chronic illness, animal rescue, and Spoonie communities online.
A lot of days, I feel “normal.” A lot of days I don’t. But I’m here. I’m here. I’m here.
Before I even begin writing this, I feel the need to give a little background to why I decided to do these and what they are.
You ready?
When I was a struggling teen dealing with some pretty heavy emotional issues, the main thing that lifted my spirits was checking the mail as I got home from school to find something for me! I have kept those letters through everything life has thrown at me and you know why? Because the few cards and letters I received were exactly what I needed to get passed all of the teen issues I struggled with.
They never solved my issues completely, but to me that wasn’t what mattered to me. I knew only I could get through it and begin to move on and keep making progress and no amount of good words or cards could automatically solve all my problems at the time.
What mattered was that they were filled with encouragement, love, acceptance. I never did figure out who sent them and looking back now, it doesn’t even matter if my grandparents stuck the letters and cards in the mail to cheer me up, or if someone else wrote them and just never signed them, it helped.
When I first got diagnosed with Interstitial Cystitis, Endometriosis, and Pelvic Floor Dysfunction, the first thing I did after bawling because I finally had answers was wish I would find a letter in my mailbox. And, yes, I realize it may seem silly to some, but it helped me through so much, I even had a shoe box I kept the letters and cards in so I could keep them but still be able to read them whenever I wanted or needed too,
It was this experience that made me want to brighten up someone’s day, to make a difference, no matter how small, in their lives.
So I began vigorously searching Pinterest and I found the perfect thing. Open When Letters!
Sheri’s Berries wrote a post in May of 2017 with 280 Open When Letter ideas as well as Open When templates. In the article, open when letters are described as
Open When letters work by giving someone a series of letters with instructions for opening at a later date or time. They can be as general as “when you miss me”, “when you’re feeling blue”, or more specific like “for your birthday” or “when you graduate college”. Ideas and themes can be as creative as you like—the more specific to the individual (including favorite jokes, movies, TV shows and other shared memories) the better. Ihave done 3 different sets of open when letters since last year. 20 for my best friend, 30 for another, 50 for my aunt and just recently I gave my friend over 30 for Christmas. I am also currently working on 64 for someone else.
3 sets of the letters so far have been for those who live in the same town as me. Yes, they can mean a lot for those out of the state or country, but they can also mean the same for those right here where I live.
I took an envelope apart, traced it onto a piece of cardboard, then used the cardboard to trace it on old scrapbook paper and then cut out and assembled those as well.
The only thing I did not do completely handwritten was DIY labels for the letters that I then printed off and taped to each envelope.
These were the ones I did for my most recent set
Open When:
You Get This,
You Need Comfort,
You Are Sick,
You Want To Get High,
You Need A Surprise,
You Need A Laugh,
You Need Some Inspirational Quotes,
You Feel Like A Failure,
You Are Angry,
You Feel Blessed,
You Feel Stuck In Life,
You Are Doubting Yourself,
You’re Nervous,
You Need A Smile,
You Feel Unappreciated,
You Want To Give Up,
You Need To Know You’re Loved,
You Need To Believe In Yourself,
You Feel Lost,
You Need To Talk,
You Need Something Extra,
You Need A Pick Me Up,
It’s Your Birthday,
You Want To Hurt Yourself,
You Need A Hug,
You Want A Girls Pamper Date,
You Are In Pain,
You Are Stressed,
You Want To Color,
You Want To Rant.
One of the first sets I did for a family member was for my Aunt Kristy and you can see them in the photo below. The labels were harder to do for those which is why this last set was printed after I created the labels in Word.
Despite all the problems lately, I want you all to know that I will always keep writing. Writing has saved me, literally and figuratively. I may not always keep to a writing schedule, even though I would love too. But I will never stop writing. Being a part of Chronic Illness Bloggers and other sites like The Mighty and IC-TODAY have helped make my writing better and surprisingly my writing has also helped others who need it. I probably wouldn’t know if they didn’t reach out and tell me, but it has only made me want to write more.
I have expanded my Social Media profiles and honestly, I probably have wayyyy too many, but I love what I do and want to share it with as many people as possible, if for no other reason than to let others they are not alone, that there is someone who understands the complicated world of Chronic Illness.
You can view all of Social profiles HERE, as well as my brand new Facebook Profile specifically for this Spoonie Sanctuary Blog. Feel free to send me a friend request and say hi, I would love to hear from you!
I do my best to keep all of my pages and Social Media Sites updated and if there is a problem with the site, a page, or you just have something you want to tell me about anything on your mind, you can reach me on any of my social profiles as well as on my Submit Your Thoughts page.
I just want to thank you for following The Spoonie Sanctuary and for giving me your honest thoughts and feelings on all that I have shared so far. If you ever need someone to talk to, or just want to submit a blog post that you would like me to share or have a topic you would like to have me write about, please don’t hesitate to let me know, please!!
Have an amazing day and know that you are amazing. Don’t ever let anyone tell you otherwise. You. Matter. Always.
The Spoonie Sanctuary 