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

Silence…

The silence drones on,
Getting louder and louder.
Cover your ears.
Turn down the silence,
Turn up the noise.
Anything to drown out
The blasting static of silence.

The yelling, screaming, hurting
Is better than silence.
I’d rather be hurting inside
Than not feeling anything at all.
Noise reminds me I
Can still feel emotions;
Silence reminds me I’m alone.

Silence is the enemy,
Music is my friend.
The words i sing out loud,
The music i hear,
Are the feelings I never
Knew to express until
Someone else put the jumbled mess into words.

Turn up the music
Get lost in the words.
Push out the silence,
Pull in the feelings
I buried deep in
The corners of my heart
Here we go. Goodbye silence, hello emotion.

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.

Still Standing

May is when the world disappeared beneath my feet a year ago. May 22, 2021. That whole month was many things. Traumatic, draining, Toxic. Amazing (the rare moments when things were good)

I have fought like HELL to get where I am today, mentally, emotionally and even physically. This has been one of the hardest years (almost) of my life.

BUT, here I am. Despite everything life threw at me, here I still am. Still standing. Still fighting.

In my head, I still haven’t gotten anything figured out, still struggling every day. To my counselor though, she’s proud of me ❤ and that means the world. I’ve been working with her for years. And when you find someone you “click” or connect with, you want to keep them for as long as you can.

I’m so grateful for the amazing support system I have. I honestly don’t know how I would’ve gotten this far without them.

I’m doing my best to get back into blogging, please be patient with me as I get my feet back under me again.

Stay strong. You can do this. Always just a message/email away if someone needs/wants to talk.

Have a topic you’d like to see? I’m always willing to take requests on topics. You can email me at thespooniesanctuary@gmail.com or find me on Facebook

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”

Lessons My Chronic Pain Has Taught Me

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

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

Here are some lessons my chronic pain has taught me.

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

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

The 7 Stages Of Trauma Bonding

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

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

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

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

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1. Love Bomb Stage

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

2. Trust And Dependency

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

3. Critical/Criticism

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

4. Manipulation/Gaslighting

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

5. Give Up Control/Resignation

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

6. Lose Yourself

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

7. Addiction To The Cycle

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

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

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

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

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

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

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

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

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

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

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

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

This is my turning point. It has to be.

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

What I Wish People Knew About Chronic Pain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stronger Than My Storm

🎵I’ve come to understand
That tragedy’s a second chance
My dying breath is where I was born
Now I’m stronger than my storm🎵

So, I have been wrestling with the decision of if I should post this (as it is personal and raw for me) for several weeks and decided to take the leap and post it. So…here we go. I’m apologizing in advance for jumping all over the place. My thoughts were all over the place 😕

I will not be going into details as I am still trying to deal with everything myself still, but I was encouraged to post this by someone I look up to very much.

6 months ago, my whole world changed forever and I ended up in the ICU in critical care on life support for several days. They were unsure if I would make it. I spent several weeks in the hospital recovering and while recovering, I somehow came across these two songs that now mean a lot to me. I’m Not Okay and Stronger Than My Storm, both by Citizen Soldier

As I have started dealing with everything that happened, some of which I’m told I may never remember,  I’m also having to figure out who I am all over again.

Because I am not the same person I was. I don’t know if i ever will be. And you know what? That’s okay.

I am stronger now. But just because I’m stronger, that doesn’t mean there aren’t some REALLY hard days.

Trust me when I tell you, life will get better. Maybe not tomorrow,  not a year from now. But slowly, you will begin to heal.

You just have to remember on your bad days that it’s okay to not be okay.  You will get through this. Just focus on one day, one hour, one minute at a time.

It is okay to reach out for help. It’s okay to admit you’re not okay. Just breathe. And know you are not alone.

Along with having to figure out who I am again, I have also had to begin the process of learning to be okay with what I may never remember. And let me tell you, it’s a struggle every single day.

Because how do you get over something you don’t remember?! I know what I’ve been told from those who were there with me through it all and through the medical records.

But there are still big gaps in my memory and that is hell. I can’t keep holding onto this. I don’t want to. It’s tearing me up inside.

Thankfully I’m blessed with an amazing counselor and a fantastic fiance who have been with me every step of the way and continue to encourage me on my bad days.  Who listen to me talk whenever I need it, even if it’s a random trigger and I just spout  off what I’m thinking.

“Some days she has no idea how she will get it done, but everyday she does.”

I am far from perfect. I have more bad days then I would like to admit. Little things trigger me, and of course one of them is the one thing I treasure over writing. Music.

So many songs are ones I once loved and now can’t bear to listen to.

But, slowly, one verse at a time, I am “taking back the music” as my counselor would say. I am doing the best I can.

Please be patient with me. I know my writing has been all over the place and rare, but I am trying.

One day at a time. We got this.