Late Night Thoughts

Since being diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Epilepsy, along with PTSD, 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 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

Lessons My Chronic Pain Has Taught Me

I know what you’re probably thinking, “How can your Chronic pain/Illnesses teach you something?! Pain is pain, there’s nothing good about it!” And to be perfectly honest, I’ve struggled for years with trying to accept my illnesses. For years I let myself focus on the bad parts, the bad days, the medication overload, the sleepless nights due to pain. I couldn’t see that despite it all, my Chronic Pain has taught things about myself. Good things and bad.

These last few months, I’ve been dealing with some extremely hard personal challenges. Its been emotionally and physically exhausting. But I’m still doing my best to move forward.

Here are some lessons my chronic pain has taught me.

1. When I was first diagnosed with Interstitial Cystitisthen later, Endometriosis, PFD, and most recently Epilepsy, one of the first things I did was search out some support groups. My ‘family’ now is spread across the world and I haven’t met most of them in real life yet. But we stand together and support each other.
2. My pain has taught me how to listen to my body and learn my limits. In the early days of my ‘journey’ I tried to keep the pace I had before I got sick and more often than not I ended up in bed for days after.
3. There is a joke, but not a funny one, going around the Spoonie communities. “Want to know who truly cares about you? Get diagnosed with a Chronic Illness.” There are only a few people in my life but they have continued to lift me up and help me because they truly care.
4. My Chronic Pain has taught me to believe in myself again. Being confident in what I can and can’t do has helped to allow myself to believe I can do anything, I just have to be careful and usually spread out over a week or more. But I do get things done.
5. My illnesses have also made me want to learn all I can about my illnesses and others that people I know have. I know it may seem strange but learning about other illnesses is a kind of hobby for me.
6. Just because I could do some walking around and hanging out yesterday doesnt mean I can do the same tomorrow.
7. The person hardest on me is myself. I judge myself harshly, put myself down for the things I can’t do. I usually end up pushing myself too far because I want to try and have a life outside of my illnesses.
8. I’m learning its okay to ask for help.
9. I want to help others like me who suffer from Chronic Pain and Illness. I even am starting my own Chronic Pain Support Group online, so everyone can join and not have to miss out due to transportation or illness.
10. I think one of the hardest things my illnesses have taught me is how to be patient with others and not become annoyed when they find out I’m sick but look fine on the outside. They all give you ‘the look’ of disbelief and some even come right out and call me a liar. It hurts.
11. There are a lot of ignorant people out there who think they know me and my illnesses better than I do based off a 2 minute internet search.
12. I’m learning to take life one day at a time, sometimes an hour at a time. And thats okay.
13. My experiences are different than those of someone with the same illness. No two people have all the same symptoms.
14. There are many others who suffer from Chronic pain and Illness, as well as invisible illnesses. You are not alone. I am not alone.
15. Taking care of myself is not selfish. Its a necessity.
16. I’m much stronger than I give myself credit for. My illnesses take a lot from me mentally, emotionally and physically. But somehow I still manage to push forward each day.
17. I have to become my own doctor as I know my body better than anyone. I’ve spent hours researching to find different treatments and ways to make my life a little easier.
18. I no longer try and justify my illnesses to others. I’m sick and while I’m doing the best I can, I should never have to feel the need to prove how sick I am.
19. I can no longer do what I used to, but I just do my best to adapt and find a way to still have fun.
20. You have to be truthful: you have to be open with loved ones about your condition, pain and feelings. So then you don’t battle alone and everyone knows the score.

What have you learned through your own journey of Chronic Pain and Illness? Let us know in the comments. 

The 7 Stages Of Trauma Bonding

This isn’t easy for me. But I can’t keep blaming myself, avoid talking about this, spending every moment trying to forget or playing everything that happened on a never-ending loop. I refuse to live like that. 9 months ago my whole world shattered, I lost who I was and even still I honestly don’t even recognize who I was then and who I am now. But I am trying. Slowly but surely.

I saw this video while scrolling Facebook called “The 7 Stages Of A Trauma Bond.” I don’t know how I came across it as most of the suggestions I get are usually for DIY crafts and cooking, but I am glad I did. Because it explained so much. The pieces fit. Sadly, pathetically, they fit. And I am so full of anger about it. I couldn’t see it and I know everyone always says “Hindsight is 20/20” and how if you’re too close to a situation, you can’t see what is right in front of you.

And I get it. I do. But that doesn’t change the fact that I should’ve listened to those who love me. To those who know me. My mind is filled with so many “What ifs”, “I should’ve” “If only”

I know I can’t go back and change what happened, but I wish with every fiber of my being that I could.

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1. Love Bomb Stage

“Love bombing is when you are showered with non-stop gifts, compliments, and attention. This begins a cycle of abuse where the love bomber withholds love and attention to manipulate you. Being showered with love can feel so good! It can be an instant confidence boost to feel so wanted and appreciated by someone.”

2. Trust And Dependency

“In this stage your partner does everything they can to win your trust. You will feel you can rely on them, and are beginning to feel dependent on them for love and validation.”

3. Critical/Criticism

The criticism generally begins slowly, and might seem like the normal progression of two peoole getting to know each other more. It will become persuasive, and you will find that you are often being blamed for things, including their feelings or perceptions and that your partner may become more demanding. These demands will gradually extend to an insistence on changes in your normal behavior, personality, or relationships with others.”

4. Manipulation/Gaslighting

During this stage, you’ll feel lost and confused as your partner convinces you that your feelings and perceptions are invalid and that all problems in the relationship are solely your fault. This type of emotional manipulation is called “Gaslighting” and can make you seriously doubt your own thoughts and reactions.

5. Give Up Control/Resignation

You are getting absolutely nowhere using your normal methods of problem solving or open discussion in a relationship. Every time you try to work things out, your partner unleashes a huge amount of blame and criticism that is both painful and exhausting. You decide to try and do things their way to resolve conflict and get things back to stage 1.

6. Lose Yourself

Any attempt to push back against the way things are in your relationship result in extreme emotional manipulation and abusive behavior from your partner. Your family and friends, who have probably expressed concern about the relationship in the previous stages, are now very worried. You have lost your confidence and your bearings, and will do anything to just avoid another fight.

7. Addiction To The Cycle

At this point, your body is running on near constant levels of high stress and craving relief or pleasure, creating a cycle of dependency that can feel very similar to a substance addiction. You probably have some sense that the relationship is bad for you, but are either making excuses for it (Like your partner has a troubled past or trauma of their own), or feel unable to leave it.

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I am doing the best I can, leaning on those close to me, mainly my best friend, my ride or die, “My Person” and I can’t tell you how much it meant to me when tonight my best friend told me “I don’t care how many times you say it, I’ll hear it every time.”

I have been struggling lately with thoughts that I should ‘be over this’ by now, or that by talking about it again, I am just keeping myself stuck in the moment. And while I agree to a point, I also believe in the power of communication, of writing how I feel if I cannot voice my thoughts using my actual voice.

Thanks to my amazing Grandma, I learned to LOVE writing. It was how we communicated when I struggled to find the words to explain how I felt. We used to pass and notebook back and forth (Like in elementary school and passing notes) until I learned to “Use my words”

Even then, even after I learned better how to communicate correctly and actually talk about my feelings, thoughts, troubles ect, I still leaned heavily on writing and I have dozens of journals filled with the thoughts in my head.

I lost my Grandma two years ago this April and am just now trying to get back into writing, for both her and me. I know she would hate that I gave up what I love most when she passed away. And honestly I hate that I lost my love of writing for a while as well.

Writing is who I am. It’s a huge part of what makes me “Me”. When I asked a friend to say the first thing that came to mind when they thought about me, they always went straight to me being a blogger, both for my multiple Chronic Illnesses, as well as the personal stuff that I deal with in my life.

I have been diagnosed with Interstitital Cystitis, Endometriosis, PFD (Pelvic Floor Dysfunction), Anxiety, Depression and Epilepsy in my short almost 28 years and been dealing with it for over 10 years now.

I am doing my best to recover from the events of the last 9 months and while some days are really good, most are still really challenging. It’s affected me emotionally, mentally as well as physically. The stress from everything has caused my body to go into ‘flare mode’ where my symptoms of my illnesses flare up and get worse.

I do the best I can to keep the stress down so it doesn’t happen, but sometimes it feels impossible, that maybe I will always feel this terrible physically and mentally. And sometimes I have flare ups for seemingly no reason at all. Like it just came barreling out of nowhere and tackles me.

I slowly feel myself getting stronger. Some days are better than others, some days I make amazing progress and some days I stay in bed all day, not moving. Ignoring the world, stuck in my own head. But I fight like hell each day to fight the thoughts in my head, to not let it bring me down even farther.

I have to deal with this, or it could destroy everything all over again. And I never want to go back to how I felt, how I still feel sometimes. I can do this. I have to. I will beat this. “I have gone through worse,” that’s what people say, right?

This is my turning point. It has to be.

I know I can do this. Maybe it’ll only be one day, one hour at a time. But it’s better than nothing, right? I know I will come out on the other side stronger, mentally and emotionally, but honestly right now it just hurts like hell….

What I Wish People Knew About Chronic Pain

With it now being 2022, as hard as it is for me and those close to me to believe, this now marks 10 years of me dealing with chronic pain. 8 since my first official diagnosis of Interstitial Cystitis. Since then, I’ve also added Endometriosis,  PFD (Pelvic Floor Dysfunction) and Epilepsy to my diagnosis list.

As chronic pain patients, we deal with so much on a daily basis with our bodies basically hating us every moment of every day. And no matter how well meaning people can be, words and advice can do more harm than good. Here are my 20 things I wish people knew about Chronic pain.

1. Being unable to work is not the same as taking a vacation. There are so many days I’ll be stuck in bed due to the pain, brain fog, exhaustion and yet I still wish I could work because I spend way too much time feeling lazy and unmotivated. I do my best to get up and moving every day,  to do one small thing so I can feel productive. But some days all I can do is lay in bed and binge watch shows like Grey’s Anatomy (my current show for the second time).

2. Chronic pain is more than just pain. We may deal with anxiety, depression,  brain fog, limited body movement and more.

3.  We hate hearing phrases such as “it can’t be that bad.” Or “it could be worse.” I know for me personally,  when someone says something like this, I struggle with frustration because to me it feels like they don’t see my pain as valid.

4. Chronic fatigue is not the same as being tired. People may struggle to find the motivation or energy to do even simple things. I know for me, things like showering or even making my bed some days can be exhausting,  even if my body feels awake.

5. Pain levels can change from moment to moment. We can go from feeling as good as possible to being stuck in bed due to pain, exhaustion, joint pains and aches, etc. We have to take each day as it comes,  even if that means hour by hour.

6. Individuals with chronic illness have a greater risk of developing other conditions. Why? Because our immune systems can be wrecked due to our health.

7. Certain foods can affect pain levels. Especially since being diagnosed with Interstitial Cystitis,  I found this to be true. There is a special diet my doctor put me on when I got the diagnosis of all the foods that I should avoid (which some days feels like everything good). While some people can handle foods others can’t,  I’ve lately had to go through the list yet again and remove some other foods I used to be able to handle. So now I do my best to avoid foods that are acidic, or has a lot of preservatives

8. Our energy levels, like our pain levels, can change in an instant. We only have a certain number of “Spoons” When I got my first diagnosis, a friend of mine sent me The Spoon Theory, which has become a big part of my life when I try and explain how I can’t do the same things I did the day before because  “I was out of spoons”

9. We struggle to find a good doctor. So when we find a good one, we do everything we can to keep them. One thing I found out is most medical schools only offer a few hours of training in chronic pain management, unless they specialize in it.

10. We are not lazy. We do our best to still have some form of a “normal” life

11. We try to look our best. I know for me, when I feel like absolute crap, I like to wear earrings or do my makeup, which I know makes no sense 🤣. I use energy I don’t have to look better because it makes me feel better emotionally

12. We are not drug seekers. We want anything that will help with pain, even if it means surgery.

14. We can become super active on good days. When we feel good, we want to take advantage of feeling good and do things we weren’t able to do on previous days

13. We don’t always know how to manage our pain. No matter how long we’ve been dealing with pain, that doesn’t mean we know how to manage it as it can change day to day.

15. We don’t want you to stop inviting us out. We still like to know people want to hang out with us, even if we aren’t able to.

16. We don’t want your medical advice. When chronic pain patients talk about their pain, they are generally just looking for someone to listen and empathize. They are seeking connection and for someone to understand the hardships of what they’re going through. Chronic pain patients often feel as if they have exhausted all their options and that things may not get better. Implying that they just haven’t tried the right therapy yet may suggest to them that you feel you know their pain better than they do. Pain is also a very individual experience, so what worked for you or your friend may not work for them.

17. We often don’t have good quality of life. Sitting and laying down all day when we are pain can diminish our quality of life.

18. Chronic pain is more than skin deep. Many chronic pain conditions are invisible illnesses. Just because people look fine or even appear to be happy does not mean they are not suffering. Many chronic pain patients learn to hide their pain in order to get through the day.

19. Pain can make people feel guilty. When we get asked out to do something and our pain prevents us from accepting the invitation, we struggle with guilt.

20. Everything isn’t always about my illness, but it also kinda has to be. I wish things didn’t have to revolve around my illness, but when I’m living with this everyday I have to work around what I can and can’t do. It’s incredibly frustrating but why should I have to apologise for it? I wish it wasn’t this way but it is.

Feeling Blessed

Wrote this at 10pm last night and as I still haven’t been able to sleep, I guess I’ll post this now 🙃

POSSIBLE TRIGGER WARNING. I have included some pictures to show you better what I’m dealing with and while they’re not innapropriate or anything, they definitely aren’t pretty.

10:20PM and I’m having the full body shakes/tremors and along with the dizziness, I’m having to use the voice to text thing because I literally can’t hold my phone, so I’m sorry if this isn’t coming out right 🤣

I know there’s only so much doctors can do till I see a Neurologist, but the last few days have been even worse than normal and honestly I’m terrified to do anything.

I spent all night and till about almost 7am dealing with what I can only describe as waves of hot goosebumps, random jolts from my head through my entire body down to my toes. Literally. Waves of dizziness, tingling from my head down to my toes. Full body shakes. And on and on.

My boyfriend ended up literally picking me up off the couch when he heard me crying on the couch because I couldn’t move and we walked like penguins from the living room to my bedroom where he tucked me in and I finally got some sleep thanks to the heavy duty sleeping pills I was thankfully prescribed that knocked me out.

My doctor is reaching out to other Neurologists in the area with the hopes of getting me in before this gets worse or Christmas comes, but so far no one has a spot open.

He says he’s concerned, BUT he’s not in the ‘freaking out’ stage as of yet 🤣

Well, that’s nice. But it’s not happening to him. As for me, mentally, emotionally, and physically, I’m really struggling to do even the basics of living.

Could really use some help in the form of memes, funny videos, anything to get my mind off what’s going on, even for a few minutes.

I have very few people in my corner, but the ones I do have? I couldn’t ask for better people ☺️😘🤟 You know who you are, and I can’t ever thank you guys enough for just being here for me, even just through a phone. Means more than you know.

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More About Me (Requested Post)

I started blogging because I know what it feels like to wonder if there is actually something wrong with you or if it’s all in your head like everyone says it is all because you look fine on the outside.

The days, weeks, months and sometimes years waiting for the test results. More than not, at least in my situation, the test results may come back ‘Normal’ and when you finally have a name for what is wrong with you, it feels great, but at the same time it can really be an emotional time. It’s not in your head, you finally have a diagnosis. But after the diagnosis comes all the changes that the illnesses bring when they come into your life.

I also know what it’s like to have little to no support from family and friends because they can’t understand how you can be fine one day, and stuck in the bed bawling the next.

How you can walk with little to no pain and ten minutes later you’re in need of a wheelchair. How you can do household chores fast, but the minute you sit down, you see how much your body is straining to remain upright as everything catches up with you. How no matter how much sleep you get, it’s never restful sleep and you’re always exhausted when you wake up.

I am 26 and I have been diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression.

7 years ago I got married. About four months later, my health took a turn for the worst and then came all the doctors, the tests, the scans, the medications, the surgeries, and losing everyone I cared about because they don’t see how I was fine and then suddenly I was far from fine.

My marriage fell apart from a million different things. But two years ago I reconnected with my amazing boyfriend (now Fiance 🥰) and he is everything I ever wanted.

My illnesses are called “Invisible Illnesses” because only on the inside you can see how much of a mess I am with all the scar tissue, the scars, the organs sticking together and swelling when I push myself too hard.

I have met some of the best people in support groups. Reach out, you never know whose lives will be touched by you.

Thankful For Them (Repost)

I actually got a request from a fan to repost this. As my recent post shows, I’m struggling with my health and everything lately which has impacted my writing a lot more than I care to admit.

But requests are always welcome, either for a repost or a topic you’d like to see. So don’t hesitate to reach out to me (www.spooniesanctuaryblog.wordpress.com/about-me)

I hate that my writing has taken a backseat to the extreme with everything going on. My writing used to be this amazing outlet and you would rarely find me without a notebook and pen every second. Now I’m struggling to even focus on the next few minutes, much less trying to plan for posts, or even just life in general.

So, I’m apologizing in advance if this post is way below the line for my previous posts. I’m trying. Please be patient with me.

This was originally posted about 3 year ago; and while it makes me sad to think about this night as she passed away 2 years ago, it did bring a smile to my face. I’d honestly forgotten about this.

I had an experience tonight that really got to me, I got angry and upset and I wanted to yell.

But then I realized something. I have to be the best I can be. I have to be stronger than the words that are being thrown at me. I have to be the example of kindness. I have to try and not let words hurt me. I have to realize that I don’t know the reason behind the hurtful words, that I don’t know why they say what they do. Its MY words and MY reactions that can make it better or worse. I have to worry about ME and as hard as it is, try and be a BETTER person and rise above it all.

Oh, I’m still upset, but I realized that was exactly how I DON’T want to be. I want to be happy. I want to help others, not belittle or yell at them. I don’t want to say hurtful things and ruin someone’s night. I don’t want to make anyone feel horrible. I want to make others feel even a little bit better and tonight, I did that.

I stepped in on a situation and helped a friend who needed it. I stood up for her. I made her feel better. And I did the best I could to make the situation even just a little better for her.

Tonight really put everything in prospective for me. I can’t change anyone, but I can be strong and rise above it all. No, I’m not saying its easy. Its never easy. But its the right thing to do.

Those of Us With Chronic Illness Could Use More Support

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.

Baby Steps…And A Challenge

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.

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.