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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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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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#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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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!

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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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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.)

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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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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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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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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!

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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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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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