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

Stronger

I’m going to do something I haven’t in quite a while. I’m going to be vulnerable. I’m going to say something I’ve wanted to say for over a year.

🎵You’re alive, you survived, it’s a sign
And the proof is in your pulse
Brighter stars only shine in the dark
You are stronger than you know🎵

This hits right in my soul, given the last 539 days. But I know I can do this. Because I’m still here. When my heart gave out that day, and I flatlined, I came back. I fought like HELL to come back.

No, I’m not over it. No, I’m not okay. Far from it. But day by day, I’m getting there. Day by day #IGetALittleBitStronger

The lyrics are from a song by Citizen Soldier called Still Breathing. One of my favorite Artists lately. They have yet to write a song that I don’t relate to or love.

https://youtu.be/JFAs8GKyZJE

I’m so beyond grateful for the amazing but small, support system I have. I love you all and I can’t thank you guys enough ❤😘

I Know…

I know you’re frustrated. I know you’re having a hard time believing things are going to get better. I know you want the pain to stop, you want the questions to stop, you want the self-doubt to stop. But you need to hold on a little longer.

You need to get through the day. Even if you don’t leave the house, even if you don’t shower, even if you don’t brush your teeth, at least make it through the day. Other people might think you’re lazy for cooping yourself up inside for hours on end, but you know better than them. You know you’re strong for making it through the day at all.

Some days aren’t meant to be productive. Some days aren’t meant to be jam-packed with activities. Some days are simply meant to be lived.

You need to live through today, even if you’re doing it from inside your bedroom.

You need to live through today, even if you don’t have the energy to move from your bed.

You need to live through today, even when you feel like you aren’t living at all.

No, you can’t lock yourself away in a cage forever, but today is not forever. Today is all you need to worry about right now. Get through today and the rest will come later.

That doesn’t mean you have permission to procrastinate. If you can muster up the courage to call a therapist, do it. If you can muster up the energy to return texts, do it. If you can muster up the strength to leave your house and get through the day, as usual, do it.

Your feelings are valid. Your mental health matters. Asking for help is a step toward the healing process, it’s a step toward feeling okay again.

But on the days when you don’t feel okay enough to function, as usual, don’t be too hard on yourself. Don’t call yourself a failure. Don’t assume there’s something wrong with you.

Thousands of people experience the same things you’ve been experiencing. You wouldn’t want them to give up on themselves so you shouldn’t give up on yourself either.

Keep going. Keep breathing. Keep living.

You might feel like you’re never going to stop making mistakes. You might feel like everyone you love is going to leave you eventually. You might feel like you have nothing to offer this world. But those are fears, they aren’t facts.

The little voice in the back of your head is a good liar. It’s good at convincing you your worst fears are true but you have to remember you are in charge of your own identity. Your worst moments don’t define you. Your baggage doesn’t define you. Your insecurities don’t have to hold you back forever.
No, you might not have the energy to do much more than eating breakfast today, but that’s a start. That’s a small stepping stone and with enough time, even the smallest stepping stones will lead you to someplace beautiful.

You are strong for making it through yesterday, so don’t you dare give up on yourself, because you can make it through today too.

100 Ways to Show Up for People with a Chronic Illness

So, I didn’t write this post, (KUDOS to anyone who know the reason I chose the picture I did for this post) it was originally written by Maggie Levantovskaya but I decided to post when I realized how great it was.

I just wanted to put my little bit in here; feel free to keep scrolling if you want 🤣 A few days ago, someone…I really cared for told me I am just using the wheelchair for attention, and I didn’t really need it. I did everything in my power to NOT let it get to me. But honestly, it did get to me. Then I remembered that she’s not a part of my life anymore, she hasn’t seen everything I went through, everything I’m CURRENTLY going through. So I’m doing my best to let it go. ANYWAY, here’s the article you came to read

Forty percent of Americans live with at least one chronic disease, and a third of us live with multiple chronic conditions. If you don’t have a chronic illness yourself, you likely interact with people who do.

I’ve lived with lupus and other chronic conditions for over a decade, at times keeping my health problems hidden for fear of being discriminated against or misunderstood. In that time, I’ve learned a lot about how people treat chronically ill folks. For instance: I’ve had a therapist tell me, “You can never be too rich or too thin,” when I lost weight as a result of gastrointestinal problems; and a co-worker complain, “I know she’s sick, but it sometimes feels like she’s just using it as an excuse to be flaky,” about someone with an incurable disease. But I’ve also had co-workers pick me up from emergency rooms late at night and offer to make me meals when I was living thousands of miles from my partner.

Having a supportive network is crucial when you have a chronic illness. But hearing problematic assumptions or intrusive questions is hurtful and exhausting, especially when they come from friends, partners, colleagues, teachers, and well-meaning strangers. So, here’s a list of suggestions for how to be a better ally to people with chronic illness, based on my experiences and conversations with friends who have other diagnoses, including Verena Hutter, who blogs about Crohn’s. The list is by no means exhaustive, but it’s a place to begin if you want to be better about checking your health privilege, if you have it, and supporting those who don’t.

1. Able-bodiedness and health are privileges. Recognize that.

2. In other words: Just because you have the physical capacity to do something or live a certain lifestyle doesn’t mean everyone does, so don’t expect them to.

3. Read up on different chronic illnesses, especially those affecting people close to you. Educating friends and family about your condition can be exhausting and annoying when information is readily available. Also, having a chronic illness can make you feel like an alien. Having close ones who know what’s up can be a real comfort.

4. Google is definitely your friend, but make sure that you are checking your sources. There are many scam websites and fad diet books that spread false information to take advantage of people with chronic illness.

5. But don’t start acting like you are an expert by trying to educate someone about their condition. They may talk to their doctor more than you do to your BFF.

6. Don’t ever question the legitimacy or severity of someone’s illness. Comments like, “I heard that was psychological,” or, “Everyone seems to have an autoimmune disease nowadays,” are extremely insulting. Sit down.

7. Know that not having a diagnosis does not mean someone is faking it. Many chronic illnesses take years to pin down and some symptoms never add up to a neat diagnosis. That doesn’t mean that the person experiencing them is not suffering.

8. Keep in mind that even doctors and researchers don’t have it all figured out when it comes to chronic illness. That doesn’t mean certain illnesses aren’t real, just that they are not yet classified. All medical conditions weren’t defined at some point—think about it.

9. Just as a rule: Believe people with chronic illnesses! I can assure you that they are not exaggerating. And they are definitely not using their illness to get out of commitments or get attention. If anything, they are probably minimizing what they are going through, especially if they are a woman.

10. Never tell someone with a chronic illness that they look “tired” or “sick” as a way of affirming them. That’s not the kind of affirmation we need, thanks.

11. It’s more than OK to tell someone with a chronic illness that they look good. Who doesn’t like to hear that? But don’t say, “But you look so great!” when someone is telling you they don’t feel well. It’s invalidating.

12. Saying “But you look healthy!” is even worse, obviously.

13. Also, please don’t compliment someone with a chronic illness on weight gained or lost as a result of symptoms or treatments.

14. In general, don’t assume that you know whether or not someone is well or healthy based on the way they look. Many people have chronic illnesses with symptoms you can’t see.

15. Know that just because you’ve seen someone with a chronic illness be active or take on many projects, that doesn’t mean that they were not experiencing symptoms at that time or that they can constantly keep up that level of activity.

16. Don’t say things like, “But you were fine just the other day!” With some chronic illnesses, there are periods of remission and flares. For others, that distinction isn’t clear and symptoms can fluctuate within short periods of time.

17. Don’t demand constant updates about someone’s health, even if you’re coming from a place of concern. Diagnosis and treatment often take a long time and constant questions can add stress.

18. Avoid asking someone with a chronic illness whether they plan on having kids. For some, it’s an extremely sensitive issue. There are illnesses that make it difficult or even impossible to have children.

19. In that vein, never, ever ask someone with an illness, “What if you were to pass on your disease to your kid?” We can make our own reproductive decisions, thank you very much.

20. In general, avoid questions about how chronic illness affects people’s sex lives and relationships. It’s invasive.

21. If you are close to someone with a chronic illness, don’t speak about their symptoms in front of them unless you are invited to. Let them do the talking and decide how much they want to share. Plus, you may not actually know what they’re going through.

22. When someone tells you about their symptoms, just listen.

23. Don’t tell that person, “You’re going to be OK, I know it!” To some people, that can make it feel like you don’t take their well-founded fears about their future seriously. Better to say: “I’m here for you if you need me. Let me know what I can do.”

24. Similarly, resist the urge to suggest thinking positive thoughts or saying that being optimistic is important for recovery. Can we please have feelings?

25. Remember, people with chronic physical illness are at higher risk for depression. So, it’s especially important not to dismiss their emotional responses.

26. This is a big one: Do not try to cure people with chronic illness. Thanks for caring, but unsolicited advice is just that—unsolicited.

27. Listen: Exercise is not the blanket solution to all health problems! Stop promoting it as such. And know that many exercise environments aren’t safe or welcoming to people with chronic illness. Teachers and trainers sometimes push their students in ways that lead to injuries or shame them for not being able to keep up with the rest of the class.

28. But exercise is an important means of symptom management for people. If you see someone with a chronic illness exercising, don’t assume they’re all better.

29. Never shame someone with a chronic illness for taking medications. Being critical of “big pharma” is OK, but there is nothing more annoying than being asked, “Aren’t you worried what all these chemicals are doing to you?” about medications that keep you alive.

30. Never, ever suggest to someone with a chronic illness that they should get off their meds and heal themselves with a diet, crystals, or supplements instead. That can be extremely dangerous.

31. Do not poo poo “western medicine.”

32. Do not poo poo “alternative medicine.”

33. Know that different kinds of treatments work for different people and just stay out of it.

34. Avoid advising someone with a chronic illness on which medical professionals they should be seeing. It may be tempting to say, “You have to go see [some rockstar doctor] at Stanford” but be mindful that not all health plans cover visits to random specialists. First, find out if someone has affordable health coverage. Some people with chronic illness are struggling with co-pays. Plus, you shouldn’t assume that HMO doctors or doctors outside of major cities are incompetent.

35. Banish the words “Have you tried…?” Yes, yes we have. Just assume that we’ve tried everything, from conventional drugs to parsley tea.

36. Trust us: Weed is not a cure-all for everyone and everything. We wish.

37. People with chronic illness sometimes have dietary restrictions. Make note of those that affect the people in your network. If a friend comes over to your house, don’t say things like, “I know you said you couldn’t eat tomatoes, but you must try this caprese salad!” We’re not playing.

38. If you make a commitment to accommodate someone with a chronic illness, make sure to find out what they need. Don’t say you can put up a friend with arthritis, for instance, and then only offer them a saggy couch.

39. Showing sympathy is really important but please don’t suggest you “know what it’s like.” Getting stomach aches all the time is not the same as having Crohn’s, and being “low energy” is not the same as having Narcolepsy. It’s just not.

40. Do not shame someone with a chronic illness for needing what you consider too much sleep or for going to bed early.

41. Do not assume that someone can handle manual tasks. “Pizza and beer for helping me move my apartment this weekend!” may sound like fun to one friend but like a nightmare to someone with chronic pain.

42. Avoid putting your friends in a position of having to excuse themselves and remind you—once again—why they can’t help you. It can make someone feel like you haven’t been listening.

43. If someone with a chronic illness has to cancel last minute, cut them some slack instead of considering them a flake. Symptoms can flare up at any moment.

44. Ask your friends with chronic illness how you can help them. Cooking meals, giving rides, or accompanying on doctors’ appointments, can mean the world to those who need the help. This may be especially true for people living alone.

45. Urban and rural areas hold various challenges for someone with a chronic illness. Cities can be hectic to navigate for those who are tired, in pain, and sensitive to noise. Rural areas can be hard to get around for those who don’t have accessible transportation. They are also isolating. Be mindful of this and reach out to offer support if you can.

46. But please no illness-related gifts, unless you are certain that the recipient wants them! Hearing “I got you this massager for your chronic back pain!” can make someone feel like you only think of them as being sick.

47. Don’t assume that people with chronic illness can’t ever hang out! Include them, but if they can’t make your event, offer them alternatives like watching a movie or having a face-time session.

48. Support and respect people who take care of those with chronic illness. Care-taking is a legitimate and important job that often goes under-acknowledged.

49. Assume that you work, go to school, or otherwise interact with people who have chronic illness and act accordingly. Having at least one chronic illness is statistically normal in the US.

50. When scheduling work meetings and socials, ask your co-workers about accommodations. Get to know who, for example, can’t handle noisy rooms or being outside. Find out who needs guaranteed seating because they can’t stand for long periods of time.

51. Give people who can’t make in-person meetings alternative ways to get information and participate rather than excluding them.

52. When scheduling meetings, avoid assuming that unusual times are fair game. For some people with chronic illness, symptoms are worst in the mornings, for others in the evenings.

53. This should be a rule in general, but don’t plan work events solely centered around alcohol consumption!

54. Avoid accidentally disclosing someone’s diagnosis. Just because someone confides in you, doesn’t mean that they are out at work. It’s always better to double check.

55. When you have to accommodate someone with a chronic illness, do not act like you’re being put out—no groaning, moaning, or haggling with someone who is asking for accessibility, please.

56. Remember that a request for accommodations is not an invitation to pose countless questions about the illness. Google when you get home.

57. Seeing someone take medication, adjust their insulin pump, or use a cane is also not a good reason to bombard them with questions. And definitely don’t stare.

58. Don’t underestimate co-workers with chronic illness. Many of them are doing their jobs excellently, even when in pain.

59. But don’t assume that “treating them the same” is the way to go. It’s better to ask. The person with the chronic illness knows best what they are capable of in a given moment.

60. If you are in a managerial position, show that accessibility is a priority. Rather than waiting for employees to come to you with a doctor’s note, open the conversation by asking what they need to thrive in their positions.

61. In general, try to make it easy for people to get accommodations. Those with chronic illness should not be the ones always initiating the “Sorry to bother you, but” conversation.

62. Whether or not you’re in charge of a team, be wary of worshipping at the altar of productivity. We should all be less focused on productivity as a measure of success or competence—it’s ableist.

63. Teachers: Include the voices of people with chronic illness in your classes. Disability Studies courses are not the only spaces where students should learn to think critically about illness.

64. Make a real effort to not single out students who need accommodations. Don’t let that note from the disabilities office be the last word on how you give access. Talk to your students face-to-face and find out what they need beyond the most basic accommodations.

65. Few things are as demoralizing as hearing a teacher say, “Sure, I’ll accommodate you, so long as you know that you won’t get ‘extra time’ in the real world.” Don’t be that teacher! If you are, you clearly haven’t heard of the Americans with Disabilities Act. Also, you don’t actually care about your students.

66. Doctors: Don’t shame your patients or minimize their experiences if a symptom doesn’t qualify as “serious” to you.

67. Women are more vulnerable to illnesses that come with chronic pain and are regularly under-treated for pain. Black patients are routinely under-treated for pain. If you’re a doctor, let that inform how you give care.

68. Therapists: Why are you sometimes giving unsolicited medical advice? Hearing “Have you tried…?” or “This could be psychological…” from you is especially frustrating and counter-productive.

69. Also to therapists: Do not expect your patients to educate you about their illnesses. This takes up valuable therapy time. Remember, people with chronic illness have to juggle many different medical appointments and it’s often not easy for them to make time for therapy.

70. Business owners: Being ADA compliant is the least you can do. Take additional steps to be less hostile to people with disabilities. To you, hard, minimalist stools and flat benches may seem like the height of cool, but to people with chronic pain, they are hell.

71. Bathrooms, bathrooms, bathrooms. If you are a business, clearly mark your bathrooms and do not turn away people who are not customers. No one should have to beg for a bathroom key or disclose that they are having a medical emergency.

72. Call out television shows and movies for using chronic illnesses as stupid plot devices or for comic relief. When you see a show like House treat lupus as a punchline, or movies like The Theory of Everything use illness and disability as Oscar bait, tweet at the producers and actors.

73. Support television shows and movies that tell chronic illness stories responsibly and hire actors with illnesses and disabilities, like RJ Mitte on Breaking Bad and Gaten Matarazzo on Stranger Things.

74. Support cultural institutions that make their art and events accessible via livestream or online. Not everyone can always enjoy art in person.

75. Follow social media accounts that raise awareness about chronic illness and disability, like Keah Brown’s, Esmé Weijun Wang’s, Michele Lent Hirsch’s, and Porochista Khakpour’s.

76. Also, these women have published or forthcoming books on chronic illness. Buy them!

77. Celebrating health is OK. Using language that suggests that lives with illness and disability are less worth living is not. Know that living “a full life” means different things to different people.

78. Be wary of participating in wellness and fitness movements that promote ableist culture by getting their participants to push beyond their “breaking point” and shaming them for failing.

79. If you belong to a fitness community, work on making it more inclusive to people with diseases and disabilities. Ask if your gym or yoga studio makes accommodations or offers special classes. The only yoga class I’ve been able to regularly attend since being diagnosed gave people with injuries and disabilities the option of working on a separate routine, with equal attention from the instructor.

80. Living with a chronic illness is expensive. This can’t be understated. Even people who have health insurance have additional financial burdens that can be astronomical. So keep that in mind when inviting people out for expensive dinners or trips.

81. Advocate for universal health care! Remember that thing I said about having a chronic illness being expensive? This would help.

82. Advocate for paid medical leave for all at national, state, and local levels. FMLA only requires that someone be allowed to take off twelve weeks without pay and not lose their job. This is not enough time for many people to go through the process of diagnosis and stabilize through treatment. And people in the gig economy have no safety net at all.

83. Show up in whatever way you can, but never guilt-trip people whose health issues prevent them from doing the kind of activism that’s accessible to you. In our pussy hat, protest-selfie moment, there’s a tendency to idealize in-person activism. Resist the urge.

84. If you have a chronic illness, support people with other chronic illness and disabilities. Work on building a wider coalition.

85. Be intersectional in your allyship and advocacy. Race, class, gender, geographical location, education level, and other factors are predictors of health. It should come as no surprise that “minorities experience earlier onset of illness, greater severity of disease, and poorer survival.”

86. Research for some chronic illnesses is woefully underfunded. When donating money or time, find out which causes are especially in need of support.

87. And get to know illnesses that disproportionately affect minorities. For example, 90% of patients with lupus are women and the disease is two to three times more prevalent among women of color. Women of color are also more likely to experience serious complications as a result of the disease.

88. Rather than thinking in terms of how people fail to function in our world, think about how our world fails to serve them. A lot of disabilities are disabilities because of a lack of accommodation, as opposed to lack of ability. For instance, someone who has chronic pain in the morning can still do the job, just not in the morning; and someone in a wheelchair can’t access a building only because there is no ramp. I know, take a moment.

89. This may seem obvious, but no one deserves to be ill. No one deserves to be in pain. No one deserves to be without healthcare. Not because of their occupation. Not because of their diet.

90. Actively resist language that puts blame on people who suffer. Hearing, “It’s no surprise she has digestive problems, she doesn’t eat ‘clean,’” or, “If he had taken better care of himself, his symptoms wouldn’t have been triggered by all that stress,” is judgey and unfounded.

91. Resist language that divides people into simplistic binaries like healthy and ill, able and disabled. When you say, “I’m all for the ACA, but it sucks that I have to pay so much for health insurance when I’m perfectly healthy,” you’re basically othering ill people and ignoring the fact that most of us were deemed healthy until suddenly we weren’t.

93. Don’t just avoid all conversations about chronic illness. Pretending that someone with a chronic illness does not have it does them no favors. Instead, ask people with chronic illness how they are doing and let them steer the conversation. Again, tell them you are ready to support them in the way that they need.

94. Be prepared to hear what they have to say even if it’s painful and disturbing to you. People with chronic illness should not have to sugar-coat their experiences. Don’t expect them to comfort you. It’s not about you.

95. Avoid ableist language. Hearing words like “sick,” “crazy,” and “lame” used pejoratively can hurt people with longstanding symptoms.

96. Learn whether the people in your network like inspirational talk. Not everyone with a chronic disease wants to be called a “heroine,” “warrior,” or even a “survivor” when they are just trying to live their everyday lives.

97. In general, do not romanticize illness. It is scary, exhausting, and financially draining.

98. Be prepared to make mistakes and get called out. People are not always going to be patient or generous toward you. They are not always going to be down for a “teachable moment.”

99. Remember, living with a chronic illness is tiring, tiring, tiring.

100. Don’t get defensive. Do better. And know that your efforts are appreciated.

Welcoming Changes

Today, for the first time in over a year, I woke up HAPPY. In a great mood and even had less pain than normal.

I feel more like myself then I have in over a year and I can’t tell you how amazing it feels 🥰

Maybe its because I’ve had so many rough days, but to me, it feels ‘weird’ to feel like this.

Honestly, I’ve spent the last year struggling and wondering if I would ever be okay. Little things would trigger me and I’d be right back there…in the hell I went through. Don’t get me wrong, I know I’m not suddenly ‘better’, its not perfect days from here on out.

But this gives me hope for better days ahead.

Tonight with my workers we went to a small craft fair type thing in my tiny town and even though I shouldn’t have spent the money, I saw these and couldn’t resist. She showed me how to do the piece all by myself, it was really simple but fun. And I bought a smaller one that is a magnet for your fridge as a kit and am going to do it later tonight. It comes with everything you need. Then, of course 😂, I saw the elephant keychain and had to have it. My Grandparents went on a mission to Thailand years ago and got to ride and elephant and my Grandma loved them, she collected mini elephant statuses and other small things.

The saying immediately made me think about how everything has gone and how I probably have become a little TOO ‘comfortable’ in staying to myself and how I don’t want to be like that anymore. How I may have to take life one day, or one hour at a time, and that’s okay.

I know this isn’t over, there are probably plenty of rough days ahead, life isn’t ‘fixed’ or ‘perfect’, but for the first time in a long time, I feel like I’m strong enough to handle it.

Just breathe. I got this.

Know Your Worth

I didn’t write this, but it struck me so much I felt like I needed to share ❤ I have been struggling a lot lately with knowing my worth, to know I matter and this came across my newsfeed at the exact right time 🥰

“A bottle of water at Costco is $0.25.

The same bottle in the supermarket is worth about $0.50.

At a local bar it probably costs $2.

In a good restaurant or hotel it can be worth up to $3.

At an airport or on the plane, you might be charged $5.

The bottle and the brand is the same, the only thing that changes is the place. Each place gives a different value to the same product.

When you feel like you aren’t worth anything and the people around you belittle you, change places, do not stay there.

Have the courage to change environments and go to a place where you’re given the value you deserve. Surround yourself with people who really appreciate your worth. 💙 #TheAddictsDiary”

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.

If Mental Disorders Were Pictures: Anxiety (Written By A Fan)

I was asked to write a piece for a friend’s blog about what anxiety looks like for me. I really dug deep and have learned a lot about my anxiety and would like to share it with you all so maybe you can better understand this part of me.

My name is Tiffany. I am 31 years old and I am a fulltime retail clerk. This is the first time I have sat down and wrote descriptively about my anxiety. Just writing this is overwhelming because it is really suffocating to explain how much weight I carry on my shoulders. I will do my best to describe how anxiety effects me.
So what Anxiety feel like to me?
A constant supply of nervousness and racing thoughts about the past, present, and future. Rerunning scenarios over and over in my head, trying to anticipate every possible outcome and how my actions, and the actions of others can influence the situation. These scenarios can be large major life altering events or something as small as what to wear or when/how to perform basic daily activities. I not only stress about activities but people as well. Anyone I encounter whether I have an actual relationship with or not, I stress about. Those whom I care about more, I worry about more. I find myself always expecting the worst of and for them. I invision horrible scenarios in which I lose them, both as a friend and as extreme as death. Anxiety is felt physically as well as emotionally. Anxiety is exhausting because my mind is always racing, even in my sleep. I never feel fully rested but I can’t just relax because there is too much to worry about, therefore I have stress dreams rather than restful sleep. It’s hard to focus and be present because my mind is always somewhere else worrying about something else. Anxiety also causes me diarrhea, gas, and frequent urination, which then in return causes me to stress about restrooms (availability, cleanliness, being noticed for frequent trips to the restroom, farting, burping, accidents, ect). I have nervous ticks such as, curling my toes, clinching my fists, jaw, pelvic floor muscles, shoulders, and sometimes other muscles as well, fidgeting, scratching, picking at my skin and nails, rapid eye movements, tapping my feet, biting the inside of my cheeks, licking my teeth, inability to sit still, ect..
Different situations trigger my anxiety and bring out these ticks more. Heightened emotions, stressful situations, driving, unforeseen scenarios, unfamiliar places and people, doctor appointments, Holidays, silence, and big crowds are my major challenges. The physical effects on my body are exhaustion, hot flashes, itchiness, sore tight muscles, very short fingernails from picking them, wounds on my skin from picking and scratching, and mouth sores from biting my cheeks. Panic attacks for me amplify all the physical and mental symptoms and tend to leave me completely exhausted and I am useless for the rest of the day, if not longer.
I tend to avoid anxiety inducing activities and find myself canceling plans, missing appointments, and avoiding people because I just can’t get control of these thoughts. Medication and therapy has helped me gain some control over my anxiety. I do lots of meditation, mantras, breathing exercises, sensory and grounding activities, and self help workbooks regularly to help combat it. I am able to work, take care of myself, and care for others as well. I look normal and healthy on the outside and am a friendly, social, and a high energy person, which constantly fights against my anxiety. I enjoy dancing, concerts, festivals, group activities, hanging out with friends, playing with children, and shopping. I am always trying to suppress my anxiety so I can still partake in the activities that bring me joy. Most people wouldn’t know that I have anxiety because I hide it well as a defensive mechanism, to protect myself from judgment and pity from others. Although anxiety appears to control my life, I feel that I still live a fulfilling life complete with fun and exciting experiences, supportive and healthy relationships, and a future with endless possibilities!

Obligated

As most of you know, I remake quotes as part of keeping myself busy and lately I have really appreciated having something ‘normal’, something fun that I choose to do. Something I didn’t feel ‘obligated’ to do.

Recently I got an email from an amazing fan who asked if I could make them this quote because this person is having a rough time trying to take care of themselves and at the same time trying to ‘blend in’ to normal society again. (Interrupting my own post to say if there’s a quote you’d like me to make, i do take requests) They can’t help but feel obligated to still try and do everything they did before they got sick or they were afraid someone very close to them would decide to leave if this person could not be ‘normal’ while dealing with a brand new life of Chronic Pain and Illnesses.

This person only recently joined in the ‘battle and journey’ of the world we know so well.

Being only recently diagnosed with Lupus has shattered this persons view of what is ‘normal’ and what is not.

Our ‘journey’ through our world of Chronic Illness is hard enough with a lot of support. This person however has almost no support at all.

I know what its like to feel like we have to not be who we truly are because we fear judgement and scorn. And even worse-we fear that those closest to us will decide sticking around for ‘the sick one’ is too much. Then they leave. It’s happened to me countless times in my now almost 10th year of this so called ‘journey’.

If you take away just two words from this rant, let them be “I’m Here” because I am. No matter your past, your illness, even if you’re not Chronically ill, color of your skin, your background, etc. None of that matters to me. None of it.

I promise; if you reach out to me like this brave person did-I will always be reaching back. No matter what.

The Words We Use (Repost)

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.