The 20 Something Spoonie

What are your favorite laundry "hacks"? Let me know in the comments! 🧺

When I was in college, I had to walk pretty far to the laundry room from my dorm, so I had to make doing laundry as accessible as possible! I got a rolling laundry basket and detergent pods, which helped, but, looking back, I wish I had gotten a portable washing machine to keep in my dorm.

Now that I live with my husband, I have a washer and dryer in my house, but it's downstairs, which isn't accessible for me, so he does the washing and drying. I've further adapted my routine so I no longer fold my clothes. Instead, I have baskets for casual clothes, underwear, towels, and so on. My husband hangs up my nicer clothes for me. This works well for us! Folding and hanging up laundry causes me a lot of pain and fatigue.

A gentle reminder that struggling to do laundry isn't a moral failing. Whatever works for you, even if that's having plenty of clothes so you don't have to wash them often, is okay.

A special thank you to the lovely folks who shared their recommendations for laundry detergent brands for folks with MCAS, MCS, etc!

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This Disability Pride Month, if you don't have a disability, I invite you to reflect on how disability rights affect you, then take one action step to advocate for them!

Knowing that 1 in 7 people worldwide have a disability, it is highly likely that you or someone you love already has a disability or will have one. You already benefit from disability rights and will likely benefit from them even more in the future, so it's important that we all fight for them now.

If you would like to know more about how you can advocate for disability rights, my DMs are open!

Sources:
1. “Adults with Disabilities: Ethnicity and Race” from the CDC
2. “LGBT People with Disabilities” from LGBT Movement Advancement Project
3. “Poverty rate among people with and without disabilities in the U.S. from 2008 to 2019” from Statista
4. “Abuse of women with disabilities” from the American Psychological Association
5. “The Faces and Facts of Disability” from the US Social Security Administration
6. “Nearly 1 In 7 People On Earth Is Disabled, Survey Finds” from NPR
7. “Design Delight from Disability - 2020 Annual Report: The Global Economics of Disability” from Return on Disability
8. “The Click-Away Pound Report 2019” from Click-Away Pound

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Happy Disability Pride Month, friends! Let’s talk about “invisible” disabilities — they’re not as invisible as you may think.

I think it’s important to acknowledge that people with “invisible” disabilities are often discriminated against and accused of faking just because their conditions may not be immediately obvious. People shouldn’t have to “look” disabled or chronically ill (whatever that even means) to access the care and accommodations they need.

Of course, that doesn’t mean that folks with obvious disabilities don’t experience discrimination, but that’s for another post.

Thank you to all of the kind folks who spent time and energy sharing the visible signs of their “invisible” disabilities!

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CW: Fatphobia, s*xual harassment, s*xism, ableism, miscarriage, threat of gun violence

Thank you so much to everyone who shared their story.

This is the reality of pursuing healthcare when you're chronically ill, especially for women, trans folks, and BIPOC. posts stories like this every day. No one deserves to hear these things, especially from a healthcare provider.

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Do you have any s*x tips? Let me know in the comments!

Disabled people, including some chronically ill people, are often infantilized and seen as nons*xual beings, but of course, that isn't true. Chronically ill people deserve to have s*x and experience pleasure if they desire.

I want to say that you don't have to feel guilty if you can't or don't want to have s*x, whether that's because of your illnesses or something else. Your partner(s) should understand and respect that. Consent is always the most important part of any physical contact.

I know there are many other topics I could cover like ma********on or kink, so if you're interested in more s*x-related content, let me know!

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What is the most supportive thing someone has ever said to you? Let me know in the comments!

Of course, not everyone will feel comforted by every single one of these things, and that’s okay. The best thing you can do is ask your loved ones how you can best support them. Everyone, not just chronically ill folks, deserves gentleness in their friendships.

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What’s your favorite way to beat heat intolerance? Let me know in the comments!

Summer is by far my least favorite season. I’m originally from the southern United States, where summer means high temperatures, humidity, bugs, and hurricanes. I had never lived without central air conditioning before moving to the UK (I acknowledge this is a privilege), which is somehow even worse. Last summer, my husband and I had to invest in a free standing A/C unit because I felt like I was suffocating. That, coupled with my two fans, air cooler, cooling blanket, and many, many ice packs will hopefully get me through this summer safely.

On the topic of safety, please familiarize yourself with the signs of heat stroke and dehydration, especially if you have POTS or another condition that makes you more susceptible to dehydration. Heat can be dangerous and even deadly.

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Of course these issues aren’t exclusive to only “young” chronically ill people. However, there is an overwhelming lack of research for certain age groups and a belief that it’s possible to be “too young” to have chronic illness, which makes being young and chronically ill a unique experience.

I want to add that young chronically ill people deserve the support and resources needed to live fulfilling lives. No one should have to worry about how they will afford healthcare after they age out of their parents’ insurance or if they’re “too young” to receive government assistance.

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I want to acknowledge that these are simple answers to a complex systemic problem. I am currently burnt out, so I’m taking a break from seeking healthcare beyond what is necessary, but that is a privilege. For some folks, limiting healthcare can be dangerous or even deadly.

I think chronic illness burnout would be significantly reduced if chronically ill people didn’t have to worry about the cost of healthcare, long wait times, medical gaslighting, and the many forms of discrimination (e.g. racism, s*xism, homophobia, transphobia, fatphobia) that occur in healthcare. Chronically ill people should not have to bear this burden.

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About four months after I became chronically ill, one of the first major tests I had was for Addison’s Disease. My doctor was so sure I had it that I felt reassured I would finally have answers and treatment options. And then he said that my results were negative and he didn’t know what was wrong with me. I was devastated. Four years later, I am still searching for concrete answers.

Let me be clear that chronically ill people do not want to be chronically ill, especially with rare illnesses that can be untreatable or even lead to death. Addison’s Disease is a scary illness that I’m relieved not to have. However, lack of diagnosis does not mean lack of symptoms. We often hope for “abnormal” test results and pursue diagnoses because we want answers to our suffering. Without answers, we can’t get help.

It is unfair and cruel how long, expensive, and traumatizing the road to diagnosis can be, especially for women and BIPOC. The “think horses, not zebras” thinking by healthcare providers often means that rare diseases are under researched, under diagnosed, and misunderstood. Further, many healthcare providers only look at what is “normal,” not what is optimal, leaving some patients to suffer.

Everyone deserves healthcare providers who will not stop until they find answers.

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What is your favorite thing you have ever read? I would love to know in the comments!

I used to love reading, but now I find it incredibly difficult due to fatigue, brain fog, and other cognitive issues caused by chronic illness. However, I'm determined to read as much as I safely can, and I'm starting with one page at a time.

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Check out my Pinterest (my username there is also ) for all of the microwave recipes mentioned in this post, and more! Link is in my story under the Connect highlight.

As always, a quick disclaimer that I am in no ways a dietician, nutritionist, chef, or otherwise professional when it comes to food. I just want to help other chronically ill folks find meal ideas that are accessible and won't trigger a flare from the effort it requires to plan and prepare meals.

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I hope this post shows that nearly everyone can do something to support the chronic illness community. No matter how small an acts seems, it can make a big impact. 💛

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It is so frustrating and unfair that chronically ill folks are often forced into overexerting themselves due to work, school, "basic" tasks, and people who don't understand boundaries. For those who don't have the privilege to pace in the first place, recovering from overexertion might be even more difficult.

We are seeing people develop Long Covid after being encouraged or even forced (against research) to go back to working, exercising, or otherwise leading an active lifestyle way too soon.

Overexertion can be incredibly dangerous for chronically ill folks. We deserve to live in a society that allows ample time for everyone to rest.

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TW: First paragraph of description includes swearing

Many chronically ill and non chronically ill people have responded to Kim Kardashian's "advice" for women in business: "Get your fu***ng ass up and work. It seems like nobody wants to work these days."

She probably wasn't even considering chronically ill people when she said that, but it emphasizes the idea that those who don't work are simply lazy. This attitude significantly impacts attitudes toward chronically ill folks, limits government assistance, and contributes to harmful beliefs (e.g. chronically ill people are "disposable" because they are less valuable).

You shouldn't have to work to be considered valuable, especially when working in today's society often means helping the rich get richer while most people struggle to afford basic human rights like housing, healthcare, and food.

I spent my entire life working toward a career I will likely never have, which I still grieve, four years after getting sick.

If all you were able to do today was wake up and scroll on Instagram, that is more than enough. You are valuable because you're here.

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Sources, for anyone who's interested:
- "Disabled people have to apply for 60% more jobs than non-disabled people before finding one" from Independent
- "This Is How Employers W**d Out Disabled People From Their Hiring Pools" from Huffington Post

My quality of life improved greatly when I started ordering groceries for delivery in college/university. I also used a rolling laundry basket to transport my groceries into my dorm. It worked well!

Since the pandemic started, grocery delivery has become widely available. If it's an option for you, I highly recommend it.

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Although brain fog can make us do silly things, brain fog can also be a frustrating, embarrassing symptom that can even be dangerous in some situations. From forgetting to take your meds to getting lost while driving, brain fog can have serious consequences on your physical and mental health. Do what you can to stay safe, friends. 💛

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Thank you so, so much to everyone who reached out and shared their stories with me. It is clear that the effects eating disorders have on chronic illness and vice versa is under-discussed and under-researched. I was only able to find three research papers — one of which is from 1998 — about eating disorders and chronic illness (note that more research has been done on eating disorders and specific illnesses like type 1 diabetes, but still not enough).

Likely due to the lack of research, there seems to be a lack of concern by healthcare providers about EDs in chronically ill patients. Doctors discuss weight and prescribe restrictive diets without considering that a patient may have a history of an ED or develop one as a result of such measures.

There also seems to be little, if any, resources specifically for chronically ill people with EDs or disordered eating. Some folks have said that accessing ED recovery resources has been difficult because of their illnesses.

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The survey included several questions about Long Covid, but there was too much information to include in one post, so my next post will be about those results.

Thank you to everyone who took the survey and/or shared it! I was only hoping to get around 100 responses, so I am absolutely thrilled to have this data for our community (although I wish it wasn't needed).

A special thank you to and on Instagram for helping me create the survey, and to the 10 wonderful folks who tested it before it launched.

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I think it's important to mention that even chronically ill people don't have the same 24 hours as each other. Each of us have different symptoms that affect us all in different ways. No matter what your days look like, your life matters.

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There is so much stigma around talking about our chronic illnesses. If we talk about them "too much," we get accused of attention seeking or "being negative," and we risk losing friends. If we don't talk about them at all, it's assumed we're suddenly cured or we were faking in the first place, and we suffer from bottling up our emotions.

Talking about your chronic illness in a healthy way can benefit your physical and mental health. For anyone who needs to hear it, this is your permission to be honest with yourself and others about your chronic illness.

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Some days I want to live in my shower, but the fatigue that comes afterwards is the worst. I hope this helps, friends. 💛

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Everyone deserves a comfortable, accessible living space. 💛

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I'm pretty sure no one hates washing dishes as much as I do. 😅

Even before chronic illness made washing dishes painful and exhausting, washing dishes would make me nauseous due to sensory issues. During my first year of college, I got dishwashing gloves and a dishwashing brush, which helped a lot! By my final year, post-chronic illness, I switched to single-use dishes. Thankfully, my wonderful husband now washes our dishes.

There is no shame in needing single-use items. You deserve to have things that improve accessibility and decrease flares. Being unable to wash dishes is not a moral failing.

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I have several five ingredient recipes on my Pinterest! My Pinterest username is also . The link is in my bio.

For those who mentioned how difficult it is to clean up after cooking, my next post is about washing dishes when you’re chronically ill!

Cooking has become one of my favorite things in the last few months! I’m privileged to have a stovetop at my desk where I can sit down to cook. I’m also privileged to have my husband, who brings me what I need, cleans up, and does many of the other household tasks so I can use my energy to find recipes, meal plan, and cook. My relationship with food is the best it has been in a long time.

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A gentle reminder to contact your doctor/gynecologist to schedule your Pap smear/smear test.

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January is Cervical Cancer Awareness Month in the US and January 17-22 is Cervical Cancer Prevention Week in the UK, so there are plenty of social media posts, ads, and commercials reminding folks who have a cervix to get a Pap smear, along with scary statistics about HPV and cervical cancer.

What frustrates me is that several groups get left out of these conversations, and some groups, especially disabled folks, get denied screenings altogether.

Further, nearly every awareness graphic I see tries to scare people into getting a Pap smear without addressing the many barriers that prevent people from seeking or accessing one.

Everyone deserves access to inclusive, accessible, trauma-informed education and healthcare that can prevent, diagnose, and treat cervical cancer.

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These factors not only lead people to believe that they are less likely to get Long-COVID or another illness, but also contribute to risky behavior like excessive drinking and drug use, reckless driving, and refusing to wear a mask.

However, some of these people are capable of change. This is what we refer to as a movable group — people who, when given the right incentives with the right messaging, will likely change their beliefs, attitudes, or behaviors.

A disclaimer that these are just my theories based off of what I learned in college/university and further recent research. I studied Public Relations, primarily focusing on communications for behavior change, with a minor in Sociology, primarily focusing on medical sociology. Understanding and thus being able to change attitudes and behaviors for the greater good (especially when it comes to health) is one of my special interests.

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For those who have the energy, I think it’s vital to learn about what sociology says about chronic illness. We can understand a lot about healthcare and attitudes towards chronically ill people by looking at concepts like healthism.

As you have probably noticed, healthism has had a big impact on the way people have responded to a particular global health crisis. My next post will be about why people believe they won’t get long-C*VID or other chronic illnesses, which healthism definitely plays a role in.

I minored in sociology in college/university, focusing primarily on health sociology, so this is a topic that I am incredibly interested in. If anyone is interested in discussing it further, please reach out!

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Chronically ill people shouldn’t have to deal with acute illnesses, too!

If at all possible, do what you can to avoid acute illness by washing your hands regularly, using hand sanitizer when you’re on the go, avoiding touching your face, wearing a mask, and regularly disinfecting your phone and frequently touched surfaces in your house. Also get your C*VID and flu v*ccines (if you’re able to) and consider avoiding unnecessary outings and social interactions due to C*VID and flu season.

Quick disclaimer that I’m not a medical professional and this is not medical advice. You should consult your healthcare provider if you have any concerns.

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This post is inspired by and , both of whom have shared excellent posts about the inaccessibility of veganism for chronically ill and disabled folks.

Although this post aims to address barriers to veganism and propose more accessible alternatives to full-time-veganism, they will still not be accessible to everyone, and that's okay. Being unable to follow a vegan diet is not a moral failing.

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Of course, not everyone has the energy to keep up with haircare and skincare or apply makeup, and that's okay. Appearance and hygiene are not attached to morality. Anything is better than nothing, and whatever you're able to do is more than enough.

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Loss of sense of self is a common phenomenon for chronically ill people, but it is possible to rediscover your identity. Who you are is so much more than your abilities.

A gentle reminder that rediscovering your identity is not as simple as reading an Instagram post. If loss of identity is affecting your mental health, consider speaking to a mental health professional.

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If these activities are still too draining for you, I highly recommend checking out “The Severe ME Bedbound Activity Masterlist: Part 1” on TheDuckOpera.Medium.com. Sarah includes 22 suggestions for things to do with your eyes closed, none of which include audio or technology.

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Thank you to for suggesting this post!

I want to emphasize that, although research shows that there can be a link between mental illness and chronic illness, far too many patients are dismissed due to a history of mental health issues. If my doctor had not dismissed my initial symptoms, which are now believed to have been meningitis, as anxiety, I might be a lot healthier today.

Further, there is hope that if trauma and mental illness are addressed early, the physical effects they can have on the body that might lead to chronic illness can be stopped.

Regardless of the suspected cause of your illness, your experience is valid.

Sources
- “Chronic Illness and Mental Health: Recognizing and Treating Depression” from the National Institute of Mental Health
- “The Relationship between Mental Health, Mental Illness and Chronic Physical Conditions” from the Canadian Mental Health Association
- “Are Chronic Illness and Trauma Related? Here's What You Need to Know.” from The Mighty
- “How stress influences disease: Study reveals inflammation as the culprit” from Carnegie Mellon University

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I’m considering creating an online social club for chronically ill folks where we can connect and have fun. It would be hosted on a Discord server where we can talk about our favorite things and hobbies, like movies and TV, music, books and writing, gaming, theatre, arts and crafts, sports, cooking, and plants. We would also have live online events like movie nights and game nights. Let me know if you’re interested!

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If you lost contact with family members or friends as a result of your chronic illness, know that you aren’t alone.

I cannot emphasize enough that how others react to your illness is not your fault or your responsibility, nor is it a reflection of who you are or how good of a person you are. It is heartbreaking to deal with chronic illness without the support of your loved ones, but there are so many people who are willing and able to offer the mutual support you deserve.

My inbox is always open to anyone who needs a friend! Please give me a gentle nudge if I don’t reply within a few days.

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The mental health effects of living with chronic illness can be even more difficult than the physical symptoms we deal with. Although medication, therapy, support groups, and other resources can't take away the depression, anxiety, grief, and other emotions that come with chronic illness, they can help us cope.

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Thank you to everyone who requested this post!

I tried to stick to only free extensions, unless they had a free version that had enough features to justify including it. I hope I covered everything, but it was a bit overwhelming, especially considering I have only ever used Google Chrome. 😅

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Tell me about your dog or other pets in the comments!

An important note: If you have a dog or other pet, please make sure they have a clean and safe environment and adequate healthcare, potty breaks, grooming, physical exercise, mental stimulation, and quality time with you.

If you’re considering getting a dog or other pet, make sure you and/or others in your household are able to provide proper care, including financially. You must be able to meet the lifestyle requirements for the breed you choose.

My husband and I have a 10 month old long-haired chihuahua (although we believe she might be mixed with another breed, like corgi) who is truly our baby. She loves her squeaky blue alien, all food, socks, playing fetch, and every single human she has ever met, and dislikes baths and vacuum cleaners. I love her so much. 💛

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