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 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 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 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.


Day 3: How did you get a diagnosis?

I do my best to explain everything in simple terms, giving as much detail as possible. However, my brain tonight seems to be playing hide and seek so please be patient with me. I’m having major brain fog moments over and over while trying to write this so in the end, I have just added links to explain everything. Don’t worry, I do my best to NOT make it a habit to just link to everything. Hopefully my brain will come out of hiding and I will be able to edit this post with my own words soon

For my Interstitial Cystitis (IC) diagnosis, a Cystoscopy was done.

Endometriosis was confirmed with a exploratory surgery in my abdomen and pelvis.

Pelvic Floor Dysfunction diagnosis was given after a variety of numerous tests described in the link above.

Brain Fog Confession/Rant

NOTE: When I began typing this, it was just going to be the first paragraph; a short funny brain fog moment to share with some of the Chronic Illness/Pain/Brain Fog support groups I belong too. Then the words just started pouring out of me. Shared it with a friend to make her laugh and decided to keep on typing and see where it went. Out came this article.

Continue reading