Those of Us With Chronic Illness Could Use More Support

Since being diagnosed with interstitial cystitisendometriosis 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.

The Words We Use

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.

With Or Without You

I know too well how it feels that no one believes you are sick because you look ‘normal’

You think that because the tests came back normal, that I must be making it all up, right?

WRONG!

The next round of tests showed just how messed up my body is, but even with proof, you still deny what is right in front of you.

If I take the two minutes to do my makeup and put on normal clothes, it does not mean that I am ‘cured’ or that I lied about my illness. It means I am trying to be stronger than the monster that is my body.

This has not been an easy journey for me. And yet here I am still standing strong in the face of the worst time of my life without the support of you.

Without you, I am still standing. Without you, I still manage to be okay.

You don’t have to believe me, I know the truth. Those in my life who have stepped up at this time in my life are those who truly matter to me.

I will get through this. With or without you.

30 Day Chronic Illness Blogging Challenge: Day 16

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.”

You can check out more of my quotes HERE

30 Day Chronic Illness Blogging Challenge: Day 15

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.

30 Day Chronic Illness Blogging Challenge: Day 14

Day 14: Give 5 things you are grateful for

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.

30 Day Chronic Illness Blogging Challenge: Day 12

Day 12: Briefly explain to a healthy person what it is like to live with this illness.

*Please be patient with me, explaining pretty much anything, but especially personal stuff has, and continues to be, something I struggle with.*

The simple version I say to someone who asks about my illnesses is the tip of the iceberg on how bad it really is. Sadly, most don’t care about the long version; and I don’t say that to be mean. Most people are usually just worried about themselves and their lives. From my personal experience, most mainly want a paragraph sized answer and honestly, I suck at that. Most ask because ‘its polite’ or ‘just what everyone does’

All 3 are classified as ‘Invisible’ illnesses. All 3 are non fatal by themselves, but all three are also incurable.

Interstitial Cystitis is a disease where my bladder lining is slowly wearing away, exposing the nerves and causing severe pelvic and bladder pain.

Endometriosis is where everything my body should get rid of during my periods is unable to be flushed out, causing it to stick to my organs, causing adhesions and scar tissue, along with scarring the outside of my organs.

Pelvic Floor Dysfunction (PFD) can mean one of two things. Either the muscles in and around someone’s pelvis are too loose or too tight. In my case, my muscles are way too tight all the time, causing severe pelvic and back pain. I do weekly PT as well as daily stretches I’ve learned at PT and some I just looked up online.

I figured by the time I was a year or so into my ‘journey’, I would have been able to explain everything easily and with no problems. Here I am almost 7 years in and it’s still hard to deal with, trying to accurately explain my illnesses and my life is even harder for me.

But here I am. Trying to help even 1 person with my writing and experiences, as well as take steps forward in my own mental and emotional health. One day at a time. Sometimes even one hour at a time. Baby steps. I can do this. I know I can. Just please don’t give up on me.

30 Day Chronic Illness Blogging Challenge: Day 11

Day 11: Why do you believe you have this illness? Bad luck, a higher power, karma, or something else?

Personally, I believe that by getting sick and all that comes with it, is to strengthen me. To force me to reach out to others. To believe in myself again.

Ask my family and friends, and their answers are all the complete opposite. My family basically has the idea that ‘my choices’ made me sick. That because I moved back here the day of my 18th birthday, stopped going to church, married someone they didn’t approve of, and generally didn’t continue with the ‘right ways’ of life they believe in, that’s why I’m sick.

This is something I’ve struggled with for years, I still struggle with this every single day. When my Grandma got diagnosed with breast cancer 6 years ago, she was doing everything right, eating healthy, natural remedies etc. But she still got sick and she is still going to die. Recently my mom got diagnosed with Chrohns Disease. In both those instances, it was ‘just what happened.’ not that there choices and actions made them sick.

I struggle to be the bigger person, to be there for them if they need me without letting my feelings get in the way of our relationship.

It took a few years, but one day it hit me. All the time and energy I was spending just to try and get them to believe me, to see I’m not faking or just wanting attention, was doing no good. I was angry that they couldn’t or wouldn’t understand. But all the time I spent being angry and hurt damaged some of the time I have had with them. So now, I just try and be as ‘normal’ as possible with them and I avoid talking about my illnesses. I just try to keep in contact with them the best I can.

My sister recently moved here for college and I feel so blessed to have the chance to finally have the sister relationship I never had the chance to have before.

Long story short, when I was 5 my dad married my step mom. When I was 10 they sent me a state away with her parents to be raised until I graduated. At the time I couldn’t see how that was the best thing they could have done. All I could see is after 5 years they just didn’t want me anymore.

My little sister that is here for college, she was 3 when I moved away. And as much as I called and spent time talking with her and my other 3 siblings, it wasn’t the same.

I moved back with them right before my senior year of high school. I spent that year doing the best I could to form a relationship with my siblings.

The day I turned 18, they packed me up and drove me back here. Once again, trying to have a relationship just by occasional phone calls and texting whenever they actually got cell service in the mountains where they live, it wasn’t the same.

We now spend most of the day sending Snapchat back and forth, texting, and two sister outings so far. The first was a week ago. We went to the movies. Tonight, we attempted to go ice skating after eating at Pizza Pie Cafe.

Let me tell you, I trip and fall on flat ground, with nothing but air in my way 🤣. I only fell once and I’m very proud of that fact. She just made it look beyond easy, skating loop and after loop while I had to take continuous breaks to breathe and rest my aching feet.

But I loved every minute of it. I can’t wait to see what we do next 🥰😂

30 Day Chronic Illness Blogging Challenge: Day 10

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.

30 Day Chronic Illness Blogging Challenge: Day 9

One thing after another and I spaced writing this the day I should have posted this, but here it is! A day late but it’s here.

Day 9: Have you ever tried any alternative therapies? If so, what? Did they work?

I have tried a few different alternative therapies for my Interstitial Cystitis (IC), Endometriosis, and Pelvic Floor Dysfunction (PFD) such as; Kratom, Essential oils, Changing my diet almost completely using this ‘IC Diet List’ I received after my diagnosis

But for the most part, the stuff that worked best for me was just a combination of lots of little things. Adding a combination of multiple Essential Oils to my lotion, soaking in baking soda epsom salt baths, laying with my heat pad. I’m sure there are others, just having a major brain fog day on top of everything else.

So this will be a short post that I hope to update when my brain decides to come out of hiding.

Wish me luck!