Since being diagnosed with interstitial cystitis, endometriosis and pelvic floor dysfunction, 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 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 only lived with my illnesses for five years. But 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.
Before I even begin writing this post, I’d just like to say thanks to all of you who have been reaching out to me and who continue reading my blog, (despite the spotty postings) lifting me up through this heartbreaking time in my life. It means the world ❤️and I ask you to please be patient with me. I know this article may seem very jumbled and way longer compared to previous posts
Hey, internet family! I know I have been MIA for the last few months (that’s putting it lightly 😬) but I’m doing my best to get back into my writing in general, as well as on here.
I recently got an email from a long time follower, who challenged me (as well as told me that they’ve been missing my blog posts and just wanted to check in with me to make sure I’m doing okay) to start writing again, and then sent me this link to a different bloggers article that had a huge list of questions to answer.
They told me that I need to go easier on myself as I’m dealing with a whole heck of a lot right now in my personal life. (Which, I admit, is the understatement of the year 🥺) and that if, and when, I decide to start writing again, to take baby steps and not force myself into rushing back to writing just because I worry about losing traffic on here because my postings have been spotty at best lately.
I want to pause right here to say that when I originally started blogging, my goal wasn’t to become ‘popular’ or to earn money writing.
I started blogging for a few reasons; (but I won’t get into that right now as this is already a long post 😂; but let me know if that’s something you would like to find out about)
She went on to say that it probably wouldn’t be easy to just jump back into writing, so she said maybe the first step could be just answering questions on my blog and slowly work my way back up.
I think that is a great idea! Baby steps.
While I currently have the list she sent me in the email, I thought I’d ask if any of you have a question or two in mind.
Let me know down in the comments or you can reach me HERE. Facebook is the best way to reach me as I can respond a lot faster.
I will leave this post up for a week and please feel free to ask me anything you’d like to know 😊
I’m excited to see what the responses are from all of you 😊. In a week, if I haven’t received any responses, I’ll be filling out the questions from the article I linked above. There are over 300 questions though; so I will be answering them a handful at a time.
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.
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?
Day 16: What is your favorite inspirational quote?
There are many quotes I love that have helped in many situations. I’ve even begun to make my own.
Two of my favorite quotes are ‘Its funny how day by day nothing changes; but when you look back, everything has changed.” And “A semicolon is used when the author could have ended the sentence; but chose not too. The author is you and the story is your life.”
Day 15: What would you say to people newly diagnosed with this illness?
So many things came to mind as soon as I read the daily challenge but a few come to mind the most.
Don’t brush off symptoms-I can’t even count the number of times I ignored my symptoms and told myself I was just working too hard or not sleeping long enough; and on and on.
Keep a daily log of symptoms and activities-to help make your ‘journey’ go smoother to finding answers, having a log of every part of your life is a huge help.
Trust your gut-you know your body better than anyone. No one knows how you feel better than you.
And most of all, be your own advocate-So many times I’ve had doctors, nurses, friends and family intentionally or otherwise make me doubt what I’m going through. After all, if all the tests come back normal again and again, it must be in my head. Right?
Don’t give up. It can be easy to get frustrated when you spend days, months, or even years in and out of doctors offices, hospitals, having a million tests done, endless medications and a lot of trial and error to find the right treatment for you.
1. My amazing boyfriend. He encourages me, loves me even when I’m not being lovable, doesn’t let me talk bad about myself, always tells me I’m beautiful even when I can’t face myself in the mirror. He listens to me say what I’ve probably already said a million times. He’s patient. He immediately drops whatever he’s doing just to hold me for a minute and kiss my forehead. I could go on and on ❤️ We first met when I was 14. We’ve both been through hell many times in the years apart from each other. But, now at 25, I’m back right where I belong.
2. I’m beyond grateful for the chance to be in my little sisters life again and actually get to have girl’s nights out. We never really had the chance to get close as she was 3 when I left and moved out of the state and in the care of my mom’s parents till my senior year. She is now here for college and told me she doesn’t care if I suck at being a big sister. That all she cares about is that I do my best ❤️
3. I’m grateful for the “Spoonie” community. A ‘joke’ that goes around the Spoonie groups online is ‘Want to know who truly cares about you? Get diagnosed with a chronic illness.’ not a funny joke, but it hits home with almost all of us, especially those who have little to no support since their own ‘journeys’ began.
4. I’m grateful for the amazing people in my life who love me despite the struggles I have. Who love me even when I’m not loveable. Who are there any time day or night I can call even if I just need to cry and have them listen ❤️
5. I’m grateful for the chance to put myself and my writing out there for the world to see. If my writing can help even 1 person, I’ll pour out my heart and soul. All I’ve ever wanted since I started blogging was to help people know they don’t have to go through it alone anymore. I want someone to read something I’ve written, and for a second, just a second, they know they will make it. They know they can keep pushing on, even if it’s the hardest thing they’ve ever had to do.
Day 10: What little things makes your life easier?
There are so many little things that make my life easier with 3 incurable but non fatal chronic illnesses, but for now, I just want to share the two things that have helped above all else.
When I first began my ‘journey’ to find answers as to why I was suddenly so sick I couldn’t even get out of bed, I began blogging as a way to work through all the emotions I was feeling, as well as to maybe find others in my same situation. Best decision I made, although a uncomfortable one at first. I was and am a huge writer, and I have dozens of books filled with my words. But I had never up till that point shared the details of my personal life online.
I knew I had to do something to help me deal with everything that was happening. I couldn’t keep it bottled up inside and hope to come out unscarred emotionally.
So I started my blog, and the responses, while slow at first, rapidly became more and more. Others sharing their stories, stories of others they know or heard about, opinions and questions all for them, these strangers, to do what they could to help me find answers.
It still makes me emotional when I think about it. I never would have thought perfect strangers would actually try and help me. But I’m beyond glad they did. It helped me find answers, but most of all, it helped me deal with all I was feeling and having someone who’s there for you, even if they don’t have any sort of Chronic illness, is such a blessing. Someone to remind you that you are human. That your emotions and feelings are valid and natural.
Some of the best friends I have ever known I’ve never met face to face. Endless video chats and emails, yes.
I have a HUGE ‘unbiological family’ scattered all over the world, not just the US. Sharing my story was the best decision I have ever made. It forced me out of my comfort zone, to be vulnerable, to reach out to the nameless people online for support and answers.
Now, almost 7 years later, I’m still receiving emails from people asking how I’m doing and if there’s anything they can do to help. Even more shocking, at least from my perspective, I still receive countless emails, chats, phone calls from my followers and people who came across my blog one way or another telling me how much my writing has helped them. How they hope I never stop writing.
I have always loved to write, even as a young child. But it never occurred to me that my writing was actually going to help others. That by putting words on paper, (or in my case, online) I could inspire someone I don’t even know.
I always thought there was never going to be anything good about getting sick, getting on disability, unable to work, losing countless friends and family due to my illnesses and all that comes with it. But I’m so proud to say I was wrong.
You may have come across a page on my blog called Quotes By Me. After my ‘Journey’ began and I had to fill up every single day with anything just to prevent me from going crazy. I began making custom quotes, at first just ones I love. Then some for different situations (Dealing with life, loss, friendship, etc.) I began receiving requests for a specific quote someone wanted to see me make for them.
That has been an amazing idea that I wanted to see if I could push myself further. So I then began to make Spoonie Thoughts And Advice, Movie Quotes, and Song Lyric quotes. I am still in the process of adding more catagories, as well as adding them to my blog.
Keep checking back for new content in each category. Please don’t hesitate to contact me if you have something you’d like me to make, or even if you just need to rant and I listen without judgement. I only give advice if someone asks for it. Otherwise I just listen.
My contact information can be found on my ‘About Us‘ page under Karley Kay. My email and Facebook are usually the ones most people use to reach out to me.
If you reach out to me, I will always reach back to you. You’re not alone. You matter. Always. Don’t ever let someone tell you differently. You got this. I believe in you.
Day 2: How have these illnesses affected your life?
I’ve had to basically learn how to do everything all over again and make changes based on my pain levels each day. Some days I get outside and am able to enjoy the day. Most days however, I’m lucky enough to have the energy to stay awake a few hours before going right back to sleep due to pain and exhaustion.
I spend a lot of my days watching Netflix and being curled up on the couch in sweatpants doing everything I can to not move a muscle because my entire body hurts.
But you know what? Just because I sleep alot or seem to be ‘lazy’; I’m not. You don’t have to get up off the couch and be busy 24/7 to help make a difference in someone’s life. I do my best from my spot on the couch and, for most, it’s good enough.
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 email@example.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.