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        Grieving Who You Used to Be: Disability /…

        August 15, 2022

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        Top 10 Ways To Increase Shower Accessibility

        March 21, 2021

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        How to Grieve: Chronic Illness Edition

        October 15, 2020

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        Imposter Syndrome: Dynamic Disability Edition

        September 6, 2020

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        A Letter to My Chronically Ill Body

        July 18, 2020

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Joanna No Banana
  • Home
  • About Me
  • Chronic Illness
    • How to Grieve: Chronic Illness Edition
    • The Difficulty of Weight Change Caused by Chronic Illness
    • A Letter to My Chronically Ill Body
    • My Chronic Illness Changed Me & That’s Okay
  • Disability
    • Top 10 Ways To Increase Shower Accessibility
    • Imposter Syndrome: Dynamic Disability Edition
    • Disabled People Aren’t Burdens
      • Disability

        Grieving Who You Used to Be: Disability /…

        August 15, 2022

        Disability

        Top 10 Ways To Increase Shower Accessibility

        March 21, 2021

        Disability

        How to Grieve: Chronic Illness Edition

        October 15, 2020

        Disability

        Imposter Syndrome: Dynamic Disability Edition

        September 6, 2020

        Disability

        A Letter to My Chronically Ill Body

        July 18, 2020

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Joanna No Banana

Joanna No Banana

Text written is "Grieving Who You Used to Be" in white letter on a pink, floral background
Chronic IllnessDisability

Grieving Who You Used to Be: Disability / Chronic Illness Edition

by Joanna No Banana August 15, 2022

Disability and chronic illness can become a part of someone’s life at any point. Someone can be born disabled/chronically ill or become disabled/chronically ill at any point in their lives. For those of us who became disabled later on in life, we lost the ability to do certain things, such as some of our favorite hobbies or the way we enjoyed doing certain things independently. For some it doesn’t feel like a major loss, but for others maybe it feels like your entire life changed. This one is written for those whose entire lives changed.

Losing the ability to do something is in a way like losing someone close to you. It’s grief. I’ve written previously about this topic in my article where I discussed the process of grieving becoming chronically ill and/or disabled, but what about how that entire process makes us feel? It’s frightening and confusing. It can make us feel as if we aren’t in control of our lives. What about all of the life plans that we made over the years? Now, so many of our dreams don’t seem to be viable options anymore. Life is so different now. We’re so different now.

What if us being so different isn’t such a bad thing though? That’s not meant to dismiss all of the pain, grief, and suffering, but instead to take a moment to appreciate how we’ve grown as people. Maybe this is a better version of you? Becoming self-aware of your own needs and possibly having specific needs makes you a lot more aware of things others around you need. It makes you more compassionate and understanding. Having to focus our energy on our survival tends to leave less room for pleasing people. Perhaps that caused many people to leave your life, but maybe those people were never as great friends as you once thought they were. If they don’t constantly do their best to try to understand and support you, then they were never great at being your friend, partner, etc. When you don’t have the energy to act how others want you to behave, you get a chance to be your authentic self.

Advocating for ourselves is one of the most difficult things to do in the world. For a lot of us, after interacting with the chronically ill and disabled community, we became increasingly passionate about advocacy as we noticed our new friends being mistreated. Many of us began to advocate for our chronically ill and/or disabled friends which taught us to advocate for ourselves. Four years ago I wouldn’t even order something off the menu if it required a small change to be allergy-friendly for me, but nowadays on a personal level I’ve set boundaries with those around me and restaurants as to what is and isn’t acceptable behavior regarding my allergies. My passion for allergy advocacy and making sure everybody has safe food to eat grew from knowing what it’s like to not have that alongside seeing my friends deal with similar situations. If you really take a moment to think about it, can you find a way in which you advocate for yourself and/or others now much more than you did before you became chronically ill and/or disabled?

It’s okay to grieve who you could’ve been. That being said, maybe this version of you is better in some way. It’s valid if you don’t feel that way, but it’s something to consider. Even when some (if not all) of your life plans are changing due to your body behaving differently than before, you still managed to find a way to grow into the wonderful person who you are.

August 15, 2022 0 comment
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Disability

Top 10 Ways To Increase Shower Accessibility

by Joanna No Banana March 21, 2021

A major struggle of many disabled people and/or those dealing with chronic illness can be the ability to practice “proper” hygiene. This article explores some of the ways in which showering and/or bathing can become more accessible. 

What is an accessible shower? What does an accessible shower mean?

Let’s begin this conversation by addressing  what is an accessible shower. An accessible shower is simply a shower that a person can take without any major difficulties. As you find when you look through the next section of this article which suggests  potential solutions to this problem, almost everyone uses something to help them have a more accessible shower. However, for disabled people the accessibility is more of a need than a want, while for nondisabled people it tends to be more of a convenience. Either way, more accessible showering can be extremely helpful to both groups of people.  

The following are some tools/products to make showers and baths accessible:

  • 1. Shower Chair 
    • How does a shower chair help increase shower accessibility? A shower chair offers an alternative to standing while taking a shower. 
    • Who does a shower chair help?  This tool can be extremely helpful to a wide variety of people. Anyone who can benefit from sitting down can be included in this category, such as people who tend to utilize wheelchairs, those who deal with joint issues, anyone experiencing chronic pain, those for whom standing may lead to fainting, etc.
    • Examples of a shower chair:
shower bench shower chair without handles on the sides shower chair with handles on the sides
  • 2. Shower Filter 
    • How does a shower filter help increase shower accessibility?  While a shower filter may seem like an unlikely accessibility tool,  it can be extremely beneficial to reduce and remove certain types of chemicals, such as chlorine, found in modern water systems. 
    • Who does a shower filter help? Those who are sensitive to chemicals oftentimes found in the water system would find a shower filter can help increase their shower accessibility.  For example, those dealing with any sort of Mast Cell Disorder would be able to take  safer showers which wouldn’t lead to unwanted symptoms such as hives and headaches. These filters also benefit anyone using them even if they don’t usually have any symptoms caused by their shower water, especially since a lot of water systems have things like chloride added which can dry out the skin and even cause some more serious problems in the long-run.
    • Examples of a shower filter:
shower filter with six different filters Vitamin C shower filter AquaBliss silver shower filter
  • 3. Shower Rack/Suction Cup Basket
    • How does a shower rack / suction cup basket help increase shower accessibility? These products help to provide easier access to hygiene products. By doing so, those taking a shower are able to spend more of their energy on utilizing the hygiene products rather than spending their energy on searching for and reaching for their products.
    • Who do these products help? These products can help anybody. However, those with mobility issues would greatly benefit from them.
    • Examples of shower rack and suction cup basket:
shower rack hanging in shower shower shelf with suction cup
  • 4. Safe Product
    • How does a safe product help increase shower accessibility? The term “safe product” is open to interpretation as it means something different to each individual. For example, it may mean fragrance-free or offer a packaging that is easy to open. Therefore, there are a variety of ways in which these products could help shower accessibility.
    • Who do safe products help? Since safe products can have varying meanings and uses per individual, they can help a wide range of people as well. Some specific examples would be hypoallergenic products for those with allergies/sensitivities and pumps on top of products for those dealing with joint issues.
    • Examples of a safe product:
two empty bottles with pumps fragrance free Vanicream moisturizing cream fragrance free Vanicream deodorant
  • 5. Handheld Shower Head
    • How does a handheld shower head help increase shower accessibility? A handheld shower head helps to shower the entire body with a minimized amount of effort.
    • Who does handheld shower head help? It helps a wide range of people, including those who need to be seated in a shower chair.
    • Example of a handheld shower head:
handheld shower head
  • 6. Back Scrubber
    • How does a back scrubber help increase shower accessibility? A back scrubber helps to clean certain body parts, such as the back, which may be hard to reach.
    • Who does a back scrubber help? Back scrubbers can aid anyone with mobility issues.
    • Examples of a back scrubber:
wooden-looking back scrubber with exfoliating glove exfoliating material back scrubber with exfoliating gloves plastic back scrubber with loofah on the opposite side
  • 7. Shower Mat
    • How does a shower mat help increase shower accessibility? A shower mat helps to prevent slipping and even prevent falls.
    • Who does a shower mat help? Shower mats are often used by many people as a preventative measure to help people feel safer and more comfortable in their showers. Some people who have trouble standing or struggle with heat intolerance especially to the point of fainting  can heavily benefit from a shower mat.
    • Examples of a shower mat:
shower mat for inside the shower shower mat for outside the shower
  • 8. Detangling Brush 
    • How does a detangling brush help increase shower accessibility? A detangling brush allows people two more easily brush their hair in the shower while being gentle on joints.
    • Who does a detangling brush help? It helps those who struggle with fatigue, joint pain, and anyone else feels discomfort while brushing their hair with more common types of hairbrushes. 
    • Examples of detangling brush:
two brushes from Wet Brush a mint brush with a curve for joint easiness a scalp massager
  • 9. Grab Rail 
    • How does a grab rail help increase shower accessibility? A grab rail helps similarly to a shower mat as it helps with slipping and prevents falling by having an area that someone can hold onto while showering.
    • Who does a grab rail help?  A grab rail helps anyone who is worried about slipping or falling. It also helps wheelchair users as they get into the shower/bathtub. 
    • Example of a grab rail:
photo of a grab rail
  • 10. Bath Board 
    • How does a bath board help increase shower accessibility?  A bath board allows a person to rest in their bathtub comfortably and be able to take care of hygiene needs from that position since all the necessary products are already placed on the bath board. 
    • Who does a bath board help? Anyone who takes baths, especially due to accessibility needs, should consider a bath board. 
    • Examples of bath boards:
adjustable width bath board simple bath board with indent in the middle for products large and luxurious bath board

While this is a list of my personal top 10 ways to increase shower accessibility from my experience and what has been brought to my attention, please keep in mind this list will be different for different people as all our needs vary from one to the next. Check out these options. Choose what works best for you. Make showering an easier task for yourself as much as possible. Hygiene can be difficult for many disabled and/or chronically ill people, so let’s make it as easy for ourselves as we can. 

(Please note that these links are affiliate links which means I may make a small profit if you purchase these products through my links. Thank you so much!)

March 21, 2021 0 comment
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Chronic Illness

My Chronic Illness Changed Me & That’s Okay

by Joanna No Banana February 6, 2021

When many chronically ill people become chronically ill, they assume it’s just another sickness that they’ll recover from without any issues. The symptoms arise. Days go by. The doctor either blames it on anxiety or offers some medicine that doesn’t work. Months pass by. Things may be getting even worse at this point. Sometimes years will pass by before we figure out that this is something that’s not going away. It’s difficult to accept this. All of a sudden, our dreams, our goals, and what we’re physically able to do is changed. What once used to be a relaxing shower, is now a difficult task that may need assistance. Meals used to be so exciting but now it’s a difficult chore. Things become so much more difficult and complicated. Our lives are forever changed.

What makes the process of grieving our old bodies even more difficult is hearing comments about how others are waiting for the “old version” of us. As if, we aren’t the same people we used to be. In some sense, I suppose that’s true. We can’t do things that we used to do. We view the world differently now. We’re much more aware of medical gaslighting, accessibility issues, and the ableism in this world. However, that’s not really what people tend to mean when they ask for the “old me.” When they ask for the “old me,” it feels like they’re asking for me without my chronic illnesses. It makes it sound like my new accessibility needs are a burden. That makes me feel like a burden even though I know that’s just ableism.

Our friends and family are also affected by our chronic illnesses to some extent. They may need some time to better understand our current situations and that’s okay too. However, saying things like “I could never live like that” is unacceptable. Implying that our lives are worth any less, either by their words or by their actions, like deciding to leisure travel during a pandemic. If you’re a friend or family member of someone with a chronic illness, we’re looking at you at this time to see how much you value our lives. Do you say things like the high risk should just stay home and everything else needs to open back up? As if this pandemic won’t leave many people chronically ill/disabled?

It’s important for both chronically ill people and their family/friends to accept the chronic illness. Ask the chronically ill person how you can help them. Being chronically ill is expensive. Can you afford to help with groceries? Being chronically ill is tiring. Can you offer to help run an errand for us? Being chronically ill is lonely. Can you reach out and have a conversation with us even when it includes our chronic illness? Ask us what we need. Even just being told that you’re there for us means a lot.

I’m never going to be the “old me” again and that’s okay. While my chronic illness brought a lot of new struggles and difficulties into my life, it’s also morphed me into someone who has a brand new outlook on life. I no longer worry about the little things. I don’t constantly stress out about things I can’t change anymore. I put my limited energy into things that I truly feel passionate about. I’ve met the loveliest people due to my chronic illness. I’ve learned a lot about the medical field and different chronic illnesses. I’ve learned about ableism and disability rights. I don’t want to be the “old me” again. She feels like forever ago. Certain things are harder now but I’m happy with this life as well. Becoming chronically ill doesn’t mean only positive changes, but I’ve found some positive ones in my experience. If you’re chronically ill, I hope you share my sentiment. If you don’t, that’s okay too. Please just remember that no one should be pressuring you to be somebody who you aren’t anymore. I hope the “new you” finds comfort in this.

February 6, 2021 4 comments
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Banner for article How to Grieve Chronic Illness Edition
Chronic IllnessDisability

How to Grieve: Chronic Illness Edition

by Joanna No Banana October 15, 2020

Becoming chronically ill is a life-altering event. Even if there were signs and symptoms earlier in life, once that chronic illness reaches the point of heavily influencing your daily life, it feels like a completely different world. Suddenly, life is less about hobbies, seeing friends and family, and pursuing your career. It’s much more about managing symptoms, making doctor appointments, reading medical journals, calling insurance companies, and so much more. It’s difficult having to deal with these things on top of feeling symptoms like fatigue, pain, etc. constantly. 

One major thing that can help is learning to grieve your past non chronically ill (or less chronically ill) self. Grief is a natural response to losing something or someone. In this case, you’ve lost who you were and who you thought that you would be. When we’re young, we’re rarely taught to plan for chronic illness even though it’s quite common. It’s difficult when our life plans are forced to change. However, grieving these changes helps to protect your mental health which is crucial.

The five stages of grief as explained by psychiatrist Elizabeth Kubler-Ross are known as denial, anger, bargaining, depression, and acceptance. How do they apply to chronic illness? The versions of these differ for every individual but let’s talk about some common versions of these stages. 

Stage of Grief #1: Denial

It begins with denial. You may start by denying that you’re chronically ill. It must just be a bad cold or the flu that’s been bothering you for a bit too long. You question if maybe it’s stress, lack of sleep, dehydration, or your food that’s causing you to feel this way. It’s not like it can last forever, right? But then it doesn’t go away. You try to change up your life a bit and perhaps you feel a bit better, but you’re still not feeling great. You continue trying to figure this out.The home remedies don’t make it go away. The medicine you get from the doctor isn’t much help either. It starts to get frustrating which leads into the second stage of grief.

Stage of Grief #2: Anger

You’re starting to feel angry. Angry at your body for suddenly not working like it used to. Maybe you even exercised several days a week and ate a lot of fruits and vegetables, but now you still feel absolutely horrible! That feels so unfair. You’re now angry at the doctors who keep gaslighting you. You’re getting mad at the doctors who listen but don’t provide any answers either. You’re trying out different things. Some things can help but it can get so overwhelming. It gets extremely frustrating to have to deal with this on top of everything else going on in your life. 

Stage of Grief #3: Bargaining

This stage showcases hope. You believe things can get better. You may start to bargain with the universe, religious figures, nature, your body, etc. If you just do x, y, and z, then you deserve to be healthy, so then you’ll be healthy, right? The fault in that argument is that you never deserved to get sick in the first place. Being chronically ill isn’t a reflection of your character in any way. Anyways, during the bargaining stage, you start to fantasize about how different your life can become in a better way. It feels like things can become so much easier soon. 

Stage of Grief #4: Depression

When you have a moment of realization that the bargaining didn’t change anything and that the fantasy of your body functioning differently isn’t coming true, it’s common to feel depressed, especially when you don’t have a strong support system, both with family/friends and with your medical care team. You wonder about the worth of your life and may see yourself as a burden, but you’re not a burden. You’re just someone who functions a bit differently in this world due to your body. That doesn’t make you a burden. (You can check out an article about not being a burden here.)

Stage of Grief #5: Acceptance

At some point, you learn to accept your chronically ill body, your current situation, and the way it impacts your life. Acceptance comes step-by-step. When you allow yourself to feel anger, depression, and any other negative emotion in the grieving process, you’ve allowed yourself to figure out what exactly is making you feel certain ways so you’re more equipped to deal with those negative feelings when they emerge in the future. Yes, they’ll emerge in the future once again. A new symptom, a new diagnosis, a realization that you’re unable to do something that you really want to do (it may need to be grieved more or maybe this specific thing wasn’t grieved yet) can cause the process to start over once again. However, it’ll generally get easier over time. As time passes, you’ll learn to better manage your symptoms, figure out which meds/remedies work best for you, learn to rest more, and find better support over time which also helps the grieving process.

Everyone grieves differently in their own way and at their own pace. You don’t have to follow any specific path or formula. Whatever you feel is valid, no matter if it’s positive or negative. Try to be kind and patient with yourself throughout this difficult ongoing process. At the very least, remember that you’re never alone. There is an entire chronic illness community who understands having to grieve chronic illness. We have lost a lot, but at the very least we have gained a wonderful community.

October 15, 2020 2 comments
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Chronic IllnessDisability

Imposter Syndrome: Dynamic Disability Edition

by Joanna No Banana September 6, 2020

What is imposter syndrome?

Imposter syndrome is a psychological pattern in which a person doubts themselves. Usually, this refers to someone doubting their success and fearing being exposed as a “fraud.”

What is a dynamic disability?

A dynamic disability, as coined by Brianne Benness of No End in Sight, is a disability which fluctuates in severity from one moment onto the next. 

For many of us with chronic illnesses, we have moments, days, weeks, etc. where we feel capable of performing certain tasks. However, there are also times when we feel physically incapable of performing those same tasks. Our capabilities are dynamic. They’re constantly changing. 

It’s difficult to attempt to predict the severity of our symptoms in advance. One small change in our environment or in our bodies can quickly change our level of what we can do and to what extent.

The relationship between dynamic disability and imposter syndrome:

Being dynamically disabled can cause some disabled people to feel as if they’re a “fraud” for calling themselves disabled. This tends to occur when there is a moment or phase of the disabled person feeling capable of doing tasks. They don’t feel as limited by their body, so they begin to question if they can even use the word “disabled” to describe themselves. Can they? Absolutely! A dynamically disabled person is still disabled even on their “good” days. There is no test or check list that is required to call yourself disabled. If you have days of pain in any way (such as headaches, joint pain, muscle pain, etc.) but you don’t feel that pain on other days, then you may have a dynamic disability. If you have very poor mental health days but feel great on other days, then you may have a dynamic disability. If you can dance sometimes but other times you can’t get out of bed, then you may have a dynamic disability. There are many different ways in which a dynamic disability presents itself. If you feel that this term of “dynamic disability” describes you (or may potentially describe you), then it’s a term that you should consider using. 

There is an entire disabled community that’s open to you no matter if you use that term or not. Calling yourself “disabled” makes it easier to find other folks who are struggling with the same or similar issues as the ones that you’re experiencing.

Personally, just learning about terms such as dynamic disability and invisible disability (a disability which cannot be easily seen physically) has been extremely helpful in finding “disabled” as the proper term to describe myself. If you’re dynamically disabled, please remember that there is a term for you. You and your experiences as a disabled person are valid!

September 6, 2020 3 comments
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Chronic Illness

The Difficulty of Weight Change Caused by Chronic Illness

by Joanna No Banana July 18, 2020

Chronic illnesses can affect the body in an extremely wide range of ways, but the one that seems to get a lot of attention is weight…

Chronic illnesses can affect the body in an extremely wide range of ways, but the one that seems to get a lot of attention is weight changes. Weight loss and weight gain can severely impact not only the way that we view ourselves but also how others perceive us. When someone’s weight changes due to their chronic illness, it’s very likely that their weight is not within their control. Medicine, birth control, restricted diets, and much more are linked into this complicated situation. Something to note is that this is a common experience for those with chronic illnesses. Whether you lost or gained weight outside of your control, it’s a difficult experience, especially when those around you react in certain manners.

Personally, my chronic illnesses have caused me to lose weight. My mast cell activation syndrome heavily crossed out many foods on my safety list. I have allergic reactions to most foods. My histamine intolerance further decreased that list. My SIBO makes it difficult to even drink water sometimes. My weight loss isn’t pretty or inspirational. It’s a lot of pain, both physical and emotional. It’s being proud that I was able to eat something without any reactions but then my stomach wanting to throw up. It’s eating food that should be safe, but then having an allergic reaction. It’s not being able to go to any restaurants due to airborne reactions that can put me in a flare for a week or even longer. As someone who has dealt with an unhealthy relationship with food in the past, this experience has been extremely emotionally triggering. Those old disordered thoughts of “not being worthy of food” creep their way back into my mind. So when I have someone point out my weight loss, especially as an accomplishment, you can only imagine how much it further allows my mind to creep into that narrative. Whenever this happens, especially if someone knows that I’m sick, it feels as if they’re saying that my worth as a slimmer figure is better than the much healthier body that I used to have. In my heart, I try to explain to myself that’s not the case, but it still hurts. It’s a struggle for me to keep my weight up. It’s a struggle to not faint from lack of calories. I’m trying my best every single day to help my body thrive as much as it can. My chronic illnesses that cause my weight loss aren’t “lucky” or something to be desired. It’s a constant physically and emotionally straining struggle.

For those who gain weight due to their chronic illness, they’re also treated in a way that hurts them. Pointing out something that they can’t control, especially talking about it in a negative manner, is extremely damaging. I took certain medications that I needed to be able to function at all. Guess what? I gained weight daily from them no matter how little I ate. That’s just how some bodies respond to certain medicines. Stop pointing out what you think is wrong about someone else’s body. Even if you’re not doing it to be inherently rude, it’s still likely to come across in a harmful manner. Not everyone is able to follow some sort of weight loss plan, especially when chronic illnesses are involved.

A lot of people deal with chronic illnesses that affect their weight and other aspects of their appearance as well. Weight is an extremely sensitive topic for many people. Calling those whose bodies are forced to lose weight as “lucky” or those whose bodies are forced to gain weight as “not trying hard enough” promotes extremely problematic ideas about the worth of human beings equating to how slim they can become. Your weight doesn’t determine your value. In general, especially when you don’t know the person extremely well, it’s best to not point out changes about their bodies. Allow people to embrace their bodies as you never really know what someone else is going through.

July 18, 2020 1 comment
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Banner for article A Letter To My Chronically Ill Body
Chronic IllnessDisability

A Letter to My Chronically Ill Body

by Joanna No Banana July 18, 2020

To My Chronically Ill Body,

I want to start by apologizing. I’m sorry. I’m sorry for the ways that I’ve treated you. For all the times that I didn’t give you what you needed or even what you wanted. Sure, sometimes those two things seemed to go against one another, but it was all one and the same in the end. Sometimes you just needed a chocolate bar! I wish I would’ve understood you better back then. I wish I was calling you my friend. Treating you with kindness. Instead, I poked and pricked at every part of you for being too big or too small. Always too much or not enough. I always wanted to change you, but you were working perfectly fine that entire time. 

Now, it’s a different story. Nowadays, my dear chronically ill body you’re not doing the best, but I’ve learned to understand that you’re doing your best. That’s enough for now. It has to be. I’m trying to help you. I’m researching medical journals daily, reaching out to others, and trying my best too. I hope us trying our best will be enough so that we may both feel better soon, but even if it’s not, that’s okay too. You taught me that.

From now until forever, I promise to love you properly. I’ll gently pat our bruises and kiss our painful joints. I won’t blame you for days in which you keep us in bed. I refuse to get angry for all the times that you keep us from going outside. The flowers will still be in the garden tomorrow. We will try again.

I don’t know what life will throw our way, but we’re in this together.

Thank You For Trying Your Best,

Your One and Only

July 18, 2020 0 comment
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Banner for article Disabled People Aren't Burdens
Disability

Disabled People Aren’t Burdens

by Joanna No Banana July 18, 2020

Recently there has been a wave of articles by “credible” sources such as the New York Times implying that disabled people are burdens. One article refers to caring for someone who is chronically ill as a burden. The author heavily implies that chronically ill folks are burdens in relationships. Unfortunately, disabled people are constantly being told that they’re burdens in a wide variety of ways, ranging from relationships to the healthcare system to financial situations. It’s time for the truth to come out: disabled people aren’t burdens. 

Disabled Folks Aren’t Burdens in Their Relationships

In terms of relationships, most disabled people can still physically do a lot for their partners. They may do it differently in ways that ableds don’t consider, such as a blind person cooking dinner for their partner. They may be dynamically disabled which means that they have the energy to do things on some days but not on others.  Disabled people can still do a lot of chores, errands, etc. That being said, even someone who is completely bed bound and unable to take care of themselves can still be a terrific partner. A strong relationship doesn’t stem from how many chores someone can do. It stems from something much deeper. Something a lot more important. Relationships are based on patience, love, understanding, and being there for one another. Marriage vows have the phrase “in sickness and in health” for a reason. No matter what the circumstances may be, a couple that truly loves each other will always be there for one another. Like I mentioned earlier, someone who is bed bound can still greatly contribute to a relationship by being loving and supportive, such as talking through issues and giving praise. While it may appear a bit differently, disabled people are just as helpful in relationships as ableds. 

The Healthcare System Makes Disabled People Feel Like A Burden

A lot of disabled folks are chronically ill which means that they need to attend doctor’s appointments, perform tests, receive medicine, etc much more than the average abled bodied person. Having health insurance be tied to jobs greatly negatively affects those who are too sick to work. When you’re too sick to work, it’s almost impossible to get great insurance that covers what you need. A lack of great insurance and a lack of financial gain leads many disabled folks with chronic illnesses to continue to get sicker and sicker. The healthcare system fails to provide a situation in which these folks can do the absolute best to better their health and/or manage their conditions as well as possible. Making resources, such as doctors and medicines, inaccessible makes the entire situation worse. In this situation, disabled people are made to feel like burdens when the healthcare system fails them. They don’t receive the opportunity to try to be their best selves when they have to worry about a lack of access to healthcare which leads into the financial portion of it all. 

Human Worth Shouldn’t Be Based on Productivity

Working as a disabled person can be an extremely difficult task. Having to over-push oneself to pretend as if bodily limitations are somehow connected to character is extremely toxic. Many disabled folks feel constantly exhausted due to their work, but they have to keep going for healthcare and financial reasons. If they’re unable to work, they lose that steadiness. In our society, a person is automatically looked down upon if they’re not working. Abelds and even disabled people with internalized abelism take it upon themselves to coin it “laziness” or a “lack of effort” which causes disabled folks to feel like burdens. Disabled people aren’t burdens. The root issue is that our society measures the worth of human beings by their ability to be productive in a capitalist society, but the value of a person shouldn’t be tied to their finances or the abilities of their body. It should be based on who they are as a person at their core. However, having to rely on others and constantly stress out over finances leads to it being difficult to view things in this manner.

Disabled people contribute to society like everyone else, by being a person in society who tries their best. It doesn’t really matter that much the result of those efforts, as strange as that may sound. No matter if you’re abled or disabled, you’re not a burden. You’re a person doing their best. For what it’s worth, I’m proud of you.

July 18, 2020 6 comments
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What makes the biggest difference for you in terms What makes the biggest difference for you in terms of managing your EDS? 💛

Video ft.:
Massager from @therabody 
Braces from @cleanprene @lifeweartechnologies 
KT Tape from @kttape 
Heat Pillow (also can be called a Massaging Heat Pad) from @sharperimageofficial 

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I’m so excited to show you more in detail about how these help me and showcase some other items that help me as well. 💛

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Double tap if you agree! ❤ Today, let's shine a Double tap if you agree! ❤

Today, let's shine a spotlight on the power of accommodation and accessibility. 

Have you ever taken the elevator? Have you ever had any request for your meal or drink like an extra side of sauce or more ice in your cup? Have you ever driven in a car? Those are all things that make life more accessible for you!

Accessibility isn't something that only people who identify as disabled benefit from. It's something every single person utilizes! By accommodating the needs of disabled people, we create a more inclusive world for everyone. 

In the culinary world, embracing accessibility means catering to diverse dietary needs, ensuring that everyone can enjoy the delicious offerings. From allergen-free options to culturally inclusive menus, let's savor the joy of inclusive dining experiences.

When choosing venues, let's prioritize accessibility. It's about more than just ramps and elevators (even though those are extremely important!); it's about creating an environment where everyone can navigate freely, safely, and comfortably.

Let's create a world where accessibility is not an afterthought, but a guiding principle. By working hand in hand, we can break down barriers, cultivate inclusivity, and make a profound impact on the lives of countless individuals.

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#Disability #Disabled #Accessibility #ChronicIllness #ChronicallyIll 
#CelebrateDiversity #ChampionAccessibility #AccessForEveryone #PrideInclusivity #AccessibleEvents #InclusiveCuisine #VenueAccessibility #ListenToDisabledVoices #AccessibleSpaces #InnovationThroughInclusion #MakeAccessibilityPriority
#ad Which @partakefoods flavor do you want to try #ad Which @partakefoods flavor do you want to try the most? 🍪

For me, the journey to find products I can safely enjoy as a person living with chronic illness and food allergies is difficult (to say the least!). But it brings me immense joy that Partake Foods’ delicious snacks are not only safe and make me feel seen but also super delicious! 

They offer both Crunchy cookies (Chocolate Chip, Birthday Cake, Ginger Snap, and Double Chocolate) and Soft Baked cookies (Cookie Butter, Chocolate Chip, Lemon, Double Chocolate Brownie, and Snickerdoodle) for you and your loved ones to enjoy!

My personal favorite is the Chocolate Chip flavor (both the Crunchy and Soft Baked versions), but Soft Baked Lemon is a strong second!

I also love that Partake is a Black-owned, women-led brand that champions radical inclusivity by making top 9 allergen-free, gluten-free, Kosher, vegan, and non-GMO products. Plus, they are a certified B Corp, so I can feel good about supporting them while they make a difference for the world around us. 

Check out Partake’s store locator to find their products at a store near you!

#PartakePartner #Top9Free #GlutenFree #GlutenFreeSnack #GlutenFreeSnacks #Vegan #VeganSnack #VeganSnacks #Kosher #Top9Free #Top8Free #AllergyFriendlySnacks #AllergyFriendlySnack #FoodAllergy #FoodAllergies #MastCellActivationSyndrome
Accessibility is a wonderful thing! 🥰 Many of Accessibility is a wonderful thing! 🥰

Many of us disabled folks have had to lose out on hobbies, experiences, etc. due to things being inaccessible to us. It's so disheartening to lose out on something you already loved or never even got a chance to try due to it being inaccessible to you.

That's why accessibility features are such an amazing thing!

Lately I've been spending some of my time playing video games like Stray and True Colors. One major issue for me has been flash warnings so I really appreciate when there are proper warnings. For example, in True Colors with the accessibility feature I chose, it pauses the game and reminds you to adjust light settings which made the game so much more enjoyable since I could let my guard down to some extent.

Are you aware of accessibility features when it comes to gaming? Which ones do you utilize? Let me know what you think!

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#Disabled #Disability #ChronicIllness #ChronicallyIll #DisabledGamers #Accessibility #GamingAccessibility
#sponsored What’s your favorite way to relax? P #sponsored What’s your favorite way to relax?

Personally, I love spending time with nature and admiring beautiful colors so I’m a major fan of flower fields as the perfect place to relax! 

For a little extra boost of relaxation, I love taking my MegaFood Relax + Calm Magnesium Soft Chews as the magnesium helps ease my muscle tension and helps me to feel a sense of relaxation. (It also tastes delicious!)

They are Dr. Formulated with a highly absorbable magnesium complex and individually wrapped so you can take them anywhere!

Get yours at a Target near you!

#RelaxAndUnwind #MegaFood #StressAwareness #Magnesium #MagnesiumBenefits
What makes a healthcare professional (doctor, nurs What makes a healthcare professional (doctor, nurse, etc.) the best they can be for their patients? 🤔

As someone with medical trauma, it can feel like a heavy question as I recall all those healthcare "professionals" who have failed not only me but also many other patients as well. 

That being said, these are the traits that I look for in someone I would like to have on my healthcare team:

1. Knows when they don't know something and are willing to admit it. Phrases like "I'm not sure what's going on here but I'll do my best to figure it out" is one of the most hopeful things I've ever heard.

2. Open to contacting other healthcare professionals and/or referring the patient to other healthcare professionals for additional insight. This shows an ongoing characteristic in #1 of healthcare professionals understanding their limitations and finding ways to get the patient the best care possible.

3. Compassion. This is a big one! By the time we arrive to see a specialist we might have been waiting months if not years to see them. There is a lot of pressure riding on this appointment, so having someone be compassionate is so crucial to a patient feeling heard.

4. Proper communication skills. People have all sorts of different communication styles so this can be tricky but healthcare professionals treating patients with kindness and respect via their communication skills makes it much easier for a patient to communicate what they know, what they need, etc.

5. Continual learning. There are always new things coming out here and there in the field of medicine. How can healthcare professionals learn continually? Keeping up with research from their peers and also believing their patients' experiences.

What are some things that healthcare professionals say and/or do that you really appreciate? Would love to hear your insight! 💕

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#ChronicIllness #ChronicallyIll #MastCellActivationSyndrome #EhlersDanlosSyndrome #hEDS #POTSSyndrome #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #EDSAwareness #MCASAwareness #DysautonomiaAwareness
#Ad Do you not have enough time and energy to cook #Ad Do you not have enough time and energy to cook all of your meals? @wecohospitality can help! 🥰

Check out the menu on wecohospitality.com and then select which meals/what days you would like a little bit of extra help. Place your order quickly and easily!

The pricing method is super interesting: You don’t pay upfront. You receive an invoice after the meal is already delivered to you with the cost of the ingredients used and then you get to decide how much more you would like to pay for the labor. (Personally, it’s been half the cost of using any sort of food delivery service even with the suggested rates for labor.)

Use promo code “JOANNA” for free delivery all week on your first order! 💕

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What are some things that make places inaccessible What are some things that make places inaccessible to you? 

What type of changes would you like to be made? Comment below!

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#DisabilityAwareness #DisabilityRights #DisabilityJustice #Accessiblity #DisabilityPride 
#DisabilityVisibility #InvisibleDisability #ChronicIllnessWarrior
Happiness is a beautiful and oftentimes elusive th Happiness is a beautiful and oftentimes elusive thing 💕

The biggest thing that’s helped me in achieving happiness is to not always look for it. There are many other feelings that I encompass especially when dealing with the frustrations of chronic illness. I make room for all of them so that happiness can easily come when the chance presents itself.

Here are a couple of additional things I do to increase the amount of happiness in my life: (hopefully this helps you find some additional happiness too) 💕💐

1. Practice gratitude for everything that I’m grateful for, from the weather to a good meal to whatever I can do that day even if it isn’t much. Find beauty wherever you can 💛

2. Living in the present: I try to let thoughts of the past and the future pass. I love to focus on my goals but nowadays after I make future plans I focus on everything a day at a time. ⏰

3. Finding community: Surrounding yourself with the right people makes a major difference. 💛

4. Finding purpose: While my chronic illnesses affect me negatively in many ways there are so many positives such as helping me find my purpose of helping others however I can. Building community, supporting each other, etc is a beautiful thing to be a part of. 🥰

5. Practicing self-compassion: This one is probably the toughest one for me but it’s made the biggest difference. It’s so crucial to learn to be gentle with yourself. ❤️

What do you do to help increase the chance of happiness in your life? Comment below! ⬇️

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#ChronicIllness #ChronicallyIll #Motivation #Happiness #SelfCompassion #SelfCompassionJourney
A nondisabled person can become disabled in an ins A nondisabled person can become disabled in an instant.

Nondisabled people are only one step away from becoming disabled. 

There are many accidents which can occur, such as car accidents. (Friendly reminder to not push people into pools as this can have dangerous consequences.)

We're still in a mass disabling event which is causing many chronic health issues.

Many people also may think of themselves as nondisabled but have genetic predispositions which can become disabling at some seemingly random time in the future. (Viral infections can cause these to become triggered.)

Nondisabled people can become disabled at any point. It's a reason to care about disability justice but I think the best reason is to fight for disabled people because it's important. We should care for all minorities, especially those who are at intersections of many different minorities.

Did you have a specific moment when you became disabled/started to identify as disabled? Comment below!

Personally, I've always been disabled but I didn't realize it until my "big sick" with MCAS, POTS, and EDS. How about you?

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#ChronicIllness #ChronicallyIll #MastCellActivationSyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #Disabled #Disability
#Sponsored Here are my top tips for you this aller #Sponsored Here are my top tips for you this allergy season:

1. Use Quercetin by @freedahealth 
2. Don’t go outside during peak pollen hours which are usually early in the morning.
3. Go outside after it has rained.
4. When you get back inside, make sure to shower right away.
5. Increase how often you change your bedding, especially your pillowcases!

What outside activity would you like to do this spring? Comment below!

#SpringAllergies #Allergies #Allergy #Quercetin #PollenAllergies #HistamineIntolerance #HolisticHealth
Are you tired of others assuming they know your bo Are you tired of others assuming they know your body better than you?

It's so frustrating when people tell us what we can or can't do due to our disability. 

We know our bodies best! We know if we feel up for something in the moment or if we're unable to do it. We know that pushing through leaves us with certain consequences. We know if we want to risk those consequences to push through or prefer not to do that.

It's so much more complicated than if we can do something in that moment, especially since many people live with dynamic disabilities which can change quickly. One moment we might be doing relatively great and in the next moment we might be in a flare up.

Even when other people have good intentions, we deserve the right to be listened to about our own bodies.

How do you handle people telling you what you can or can't do due to your disability? Comment below!

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#Disabled #Disability #ChronicIllness #ChronicallyIll #MastCellActivationSyndrome #EhlersDanlosSyndrome #hEDS #POTSSyndrome #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #InvisibleIllness #ChronicPain
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About Me

About Me

My name is Joanna. I’m a 24-year-old chronically ill and disabled blogger whose goal is to help build our wonderful community.

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    Imposter Syndrome: Dynamic Disability Edition

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    The Difficulty of Weight Change Caused by Chronic Illness

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    How to Grieve: Chronic Illness Edition

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