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.

I’m Still Here. I’m Still Standing.

Please be patient with me. This post may be jumbled and hard to follow, but, for the first time in a VERY long time, I’m reaching out to all of you. Usually, I write to help those who need it. Either by writing a topic one of you have requested, or something I feel might be what you need to hear.

This has hit me hard. It’s taken me this long to even begin talking about it, even with those I trust completely.

I recently found out my Grandma, who pretty much raised me, has 3-6 months left to live and they aren’t doing any treatments again. I know I’ve had her for way longer than most I know that have had cancer, but I’m not ready to lose her 😭

With everything going on these last few days, I feel like I’m losing my mind. BUT, I’m still standing. I’ve got an amazing support system of my boyfriend and his family; as well as support from those in my family, which I didn’t feel like I had before. I did. I know that. I guess I just didn’t feel like they’d want to ‘deal with me” and all my issues. Stupid, I know. They’ve told me they are always here for me and that I shouldn’t worry that they don’t support me, because they do.I’ve been through so much in my 25 years of life. Unimaginable, horrible things. I’ve also been through some things that, at first, shattered me emotionally, mentally, even physically. Some days I didn’t think I could go on. Didn’t want to. But I did. I managed to pick myself up, and keep moving forward.

Eventually, I even began sharing my story through blogging, with the hope that maybe what I had to say could help someone else, even just for a minute. The responses came slow at first, but now almost 8 years later, I’m still getting emails, messages, comments, about how my writing, my blog, has helped so many. That’s why I do it. NOT for fame. NOT for money. NOT to be ‘trending or popular’. Because all I’ve ever wanted is to help others.

#lunatunes #supportdog #family #emotionalsupport #familysupport #stillhere #emotionalbattles

Now is where I admit to all of you, I’m struggling badly with this and could use all the support and love I can get to help me through this.

A message, a comment, a silly image to make me laugh. Anything to help me deal with this.

I’m one of those people who always put others first, who hates asking for help; but I need your help. I need support to get me through this. So here I am. Saying please help me. Please.

30 Day Chronic Illness Blogging Challenge: Day 13

Day 13: Has your physical illness had any effect on your mental health? Explain.

Once again, I missed posting the day I should have. But better late than never!

Physical illnesses, chronic or not, can definitely mess with your mind. When you’re sick, usually you feel like crap and spend a lot of time resting which gives your brain nothing but time to spin in circles and do the whole ‘poor me’ thing.

I struggle every single day with pain as well as depression. I do everything I can to not let depression win. I work on my jewelry, binge watch shows, music therapy etc.

Lately I’ve been struggling more than ‘normal’ with my depression and it’s a constant cycle of doing everything I can to keep myself busy and not give myself time to get stuck in a rut. Then depression sets in and it’s harder and harder to do even the simple things. It’s easy to stay in the rut once you’re there. And I hate it so much.

Currently I’m working on my jewelry and watching SVU. I got this. Baby steps. I refuse to let my Depression win. I’m stronger than it. I just have to remember that I’m doing the best I can.

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!

30 Day Chronic Illness Blogging Challenge: Day 8

Day 8: Where do you see yourself in 5 years time?

In five years, I hope to be able to start our family. Two weeks ago tomorrow I had my second Endometriosis removal surgery (also called Laparoscopy)

More on that in a later post, so keep checking back!

I also hope to go to college and pursue a degree working with special needs children. I also hope to finally begin a face to face ASL (American Sign Language) with others who are also learning. I have been trying to teach myself for a few years with YouTube, LifePrint and as well as my many books.

Some of my favorite people to learn from on YouTube specifically are Bill Viscars and TheDailySign.

For now, I’m doing my best to take life one day at a time and just enjoy my days the best I can.

Wish me luck!!

30 Day Chronic Illness Blogging Challenge: Day 7

Day 7: What was the biggest realization you have had?

I’ve been on my Chronic Illness ‘journey’ for 7 years this April and it’s taken me this long but I finally found a GOOD thing about having multiple (3) Chronic Illnesses.

I know what you may be thinking. “How in the world is there something good about having incurable illnesses?!” But it’s true. It’s taken me this long to find a good thing about my ‘journey’ and it came out of nowhere and hit me hard as I feel like I should have seen it long before now.

When I first began my ‘journey’ to find answers, I started this blog as a way to deal with it and hopefully have some support from others in my same situation.

Now, almost 7 years later, I have a huge ‘family’ scattered around the world who understand that part of my life and support me no matter what.

And to me, that’s everything ❤️

30 Day Chronic Illness Blogging Challenge: Day 6

Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?

I would have told myself to not brush it off, that something was really wrong. And to trust what my body was trying to tell me.

Instead, I did what I wish I could change. I brushed it off, figuring it was just from me working a lot and not sleeping very well. I tried to ‘walk off’ the pain and soreness I was experiencing. Until one day I just couldn’t anymore.

I woke up one morning to get ready for work but as soon as I woke up, I curled into the fetal position and started bawling. It felt like the whole lower half of my body was on fire. Then came the muscle cramps, spasms, and severe shooting pain.

I knew then that I couldn’t push it away anymore. That something was really wrong.

I ended up at the doctor’s just a few days later to try and figure out what was going on. Many months later (and dozens of blood draws, medications, hospital visits, worsening symptoms, test after test) I got my first diagnosis, Interstitial Cystitis (IC). Then came Endometriosis and, more recently, Pelvic Floor Dysfunction (PFD)

I’ve encountered many doctors who either don’t understand how truly bad it is, or they don’t believe that I have had some of the more ‘rare’ symptoms of my illnesses because they haven’t seen it happen.

April 2020 will make 7 years on my ‘journey’ with Chronic Pain. One of the biggest lessons I have learned in those years is I have to be my own advocate. I have to stand up for myself. Not let doctors belittle me. And not explain myself or my actions to others.

I constantly feel like I have to justify my actions and symptoms to others who don’t understand. Because, in my mind, if they can understand, maybe it would help.

It usually ends up being the opposite, with them having more questions than answers and me getting flustered and irritated as I try to explain it all to them in a way they would understand.

Now I just try and live as normal a life as one can with multiple invisible chronic illnesses. I shouldn’t have to justify everything I do or don’t do while living with these illnesses. It’s still a struggle though, as I want others to understand.