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grief

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

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Queen of Allergies | MCAS EDS
Take the knowledge of your fertility into your own Take the knowledge of your fertility into your own hands!

#AD #Sponsor Fertility is a sensitive topic for many people, but it's also something that's really important to discuss. 

People worry that maybe they have a fertility problem, but they don't know who to go to. A lot of the tests at the doctor's can be extremely expensive so testing might seem out of budget.
It's also a very delicate topic, so it's great that you can find out the right info from @modernfertility for the fair price of $159 in the comfort of your own home. (Get $20 off by ordering yours through https://bit.ly/3MjRI1I ) (Link in bio!)

With just a prick of the finger and sending over your package to the lab, after a couple of days, you can log into your dashboard which showcases fertility metrics and so much more such as thyroid levels! 

Even if fertility isn't your primary goal, it's still beneficial to learn more about your body!

Many of us who are chronically ill worry about our fertility due to our chronic illnesses, daily medications, etc. The Modern Fertility test is an amazing tool that allows people to learn more about their own body so that they can plan their futures in the way that best works for them and their bodies.

I'm also so happy to share that the Modern Fertility test is now available in New Jersey!

Also remember that while this information is important, no matter the results, you are still a wonderful human being.

For those who feel comfortable sharing, have you ever worried about your fertility? What other metrics about your own body would you like to learn more about?

#modernfertilitypartner #chronicillness #chronicallyill #mastcellactivationsyndrome #ehlersdanlossyndrome
Can you relate to this? 🙃 It can be so difficu Can you relate to this? 🙃

It can be so difficult to deal with the highs and the lows of chronic illness.

We may also refer to this as “dynamic disability.”

In one moment we feel relatively okay. We feel like today will be the day where we get some errands completed and have some fun, but then our symptoms reappear or worsen and then our entire day and night changes.

This is why it’s so difficult to make plans!

We want to be invited and we want to go, but there are things stopping us. We don’t know if we will feel okay enough to attend. I’ve cried many tears over this and I’m sure that I’m not the only one, so much love to anyone who can relate. ❤️

Being on this rollercoaster of symptoms is difficult to manage, so remember to be gentle with yourself. 💛

What are some things that you’re hoping to do on your next low symptom day? I would love to know! Comment below! ⬇️ 

For more content like this follow @joannanobanana 💛

#ChronicIllness #ChronicallyIll #Spoonie #SpoonieLife
Double tap if you agree 💛 When you’re chroni Double tap if you agree 💛

When you’re chronically ill, there are many ways in most people tend to not understand the things that we go through.

One of those things is being stuck in bed.

It doesn’t mean that we want to be here. It doesn’t mean that we are necessarily relaxing. We might just be resting as needed. Resting as in trying to preserve our energy and possibly gain some back but not finding the process to be something that we prefer to do. It looks like the same action but it’s actually quite different.

Also, not having the capability to get out of bed by ourselves can be mentally and physically draining. Not going outside for weeks, months, or even years at a time can take a heavy toll on mental health. Alongside that, being constantly in bed can cause physical symptoms such as bed sores.

Do you ever experience being stuck in bed? If so, do others understand that it’s not necessarily your choice to be in bed? 💛 Comment below! ⬇️ 

Follow @joannanobanana for more content like this! 💛

#ChronicIllness #ChronicallyIll #MastCellActivationSyndrome #EhlersDanlosSyndrome
Double tap if you can relate 💛 All too often p Double tap if you can relate 💛

All too often people expect chronic illnesses to be cured with a couple of doctors appointments and some medicine (either pharmaceutical, holistic, or both.) 🤔

However that’s not usually the case. 🤷🏻‍♀️

The chronic part of chronic illness means that it’s a long term illness. That doesn’t always mean life-long but it usually does.

Oftentimes, there is no cure, but there are potential treatments that help as much as they can. The success of those treatments depends on a large majority of factors of which most are out of the hands of the patient. We’re dealt certain cards and do our best to take care of our health. 

Also, referencing my prior post, medical trauma can make it difficult to not only have appointments with healthcare professionals but even discussing these topics can be painful and traumatizing for some patients.

Patients are doing their best, so please try your best to be understanding and compassionate of others.

Do the people around you understand your chronic illness? 

Have you had trouble with people not understanding that your chronic illness isn’t easily curable? 

I would love to hear your insight 💛

Follow @joannanobanana for more content like this! 💛

#ChronicIllness #ChronicallyIll #Spoonie #SpoonieSupport #ChronicIllnessAwareness
Share this post to help raise awareness! 💛 Unf Share this post to help raise awareness! 💛

Unfortunately so many of us can relate to the experience of being gaslit by a healthcare professional.

What is medical gaslighting? It’s when a healthcare professional discredits a patient’s experiences, concerns, etc. by downplaying the things that the patient says.

It definitely sounds like an uncomfortable situation, but it’s so much more. It’s traumatizing for the patient to go to the person that’s supposed to help them and be treated in that manner. 

Also, medical gaslighting is dangerous. When a patient is dismissed, illnesses that could’ve been caught, treated, and potentially even cured (depending on the illness) may transform into something much more dangerous. On top of that, the negative experience may prevent the patient from seeking care from other healthcare professionals who may have been more open to working with the patient in a proper manner. 

It’s also crucial to point out that this issue disproportionately affects minorities. The more minorities that a patient is part of, the more likely that they are to be dismissed. 

If you feel comfortable sharing, what is your experience with medical gaslighting? How has medical gaslighting affected you? Comment below! ⬇️

Follow @joannanobanana for more content about chronic illness and disability! 💛

#Disability #Disabled #ChronicIllness #ChronicallyIll #MedicalGaslighting
Double tap if you’ve noticed the increase in foo Double tap if you’ve noticed the increase in food prices! 

Food prices have increased dramatically over the last 2 years alongside other costs of living.

We’ve encountered food shortages for a wide variety of products. When these foods come back to the shelves, they may even be at a much higher price tag.

CW: restrictive diet

As someone with MCAS, my diet is limited. Nowadays I can eat a lot more than I used to but I remember back when one of my three safe foods wasn’t on the shelves. The fear of not knowing when or if the food comes back was extremely anxiety inducing.

I know many people with a chronic illness can relate to dealing with a restrictive diet. It can be mentally, physically, and socially draining. Food shortages and price increases make it even more difficult.

Have you or someone you know been personally affected by any food shortages or food price increases? Comment below! ⬇️

For more content like this follow @joannanobanana 💛

#ChronicIllness #ChronicallyIll #MastCellActivationSyndrome #Dysautonomia #POTSAwareness
#AD Luna is my 17 year old senior tortie cat. 💛 #AD Luna is my 17 year old senior tortie cat. 💛

She is the kindest soul and most clever girl in the world. Anytime I’m dealing with health issues, she comes by to keep me company. Such a sweetheart 💛

I always want to make sure that I’m taking care of her as much as I can. I want to give her all the treats in the world but I also want to keep her diet healthy. Luna is also very decisive in her food likes and dislikes so it can be difficult to find healthy food that she enjoys.

Fortunately Luna absolutely adores the wet cat food called Feed Meow from @iandloveandyoupet 💛 Her absolute favorite is the tuna flavor. 😊

I’m so excited for her to have these three awesome flavors to look forward to, especially since they’re made of whole foods and include important vitamins. 

Get the Feed Meow line at iandloveandyou.com (available soon at chewy.com and amazon.com) 😊

Do you have any cats or any other pets? I would love to hear about them! 💛

#Cat #Cats #SeniorCat #CatFood #CatsOfInstagram #MeowfromILY #MyILYPet #iandloveandyoupet #hbtfeedmeow
Double tap if you can relate 💛 CW: Food restri Double tap if you can relate 💛

CW: Food restriction 

One of the most stressful and frustrating experiences from my experience with being chronically ill is having a restrictive diet. 

It’s usually not as simple as removing one thing and then your body feeling much better right away. It’s a lot of trial and error. A lot of anger and frustration at food. A lot of hurt when the food ends up triggering symptoms for you.

Knowing that I can’t eat anything without my meds is something that’s taken me a long time to accept. The fear that I may one day be denied oral cromolyn (which is necessary for me to eat) by insurance frightens me. 

Almost all of my favorite foods were high histamine foods so having to follow a low histamine diet is disheartening. 

There is also the fear of foods being contaminated by my allergens. I’ve had times where a food should’ve been safe but it wasn’t. I’ve lost trust in a lot of companies who don’t accurately label their foods which is why I research brands who are open and transparent about their allergens and promote them on my social media. 

That’s a bit of a rant of my story but I know others in the community have their own stories of how food restriction affects them. Feel free to share your story in the comments! 💛

At the end of the day, it’s crucial that we don’t judge what others are eating for any reason, especially since there may be factors at play that we’re not aware of.

It’s crucial to practice kindness to ourselves and to others. 💛

How has chronic illness affected your diet? Do you feel mentally drained by it or does it feel relatively easy for you? Comment below! 👇 

For more content on chronic illness and disability follow @joannanobanana 💛

#MastCellActivationSyndrome #MCAS #EDS #ChronicIllness #ChronicallyIll #FoodAllergies #FoodAllergy
Double tap if you agree 💛 Let’s start of by Double tap if you agree 💛

Let’s start of by defining accessibility. It may mean a wide variety of different things for different people in practice. It may mean a wheelchair ramp, fragrance free store, a place to sit, and so much more! At the core of it, accessibility is the practice of something (an item, a location, etc) being designed in a way that keeps in minds the needs of people. 

For many chronically ill and/or disabled people who need a mobility aid or expensive medicine (such as meds not covered by insurance), the things that they need to live their best lives aren’t accessible to them. 

Even with the rising costs of daily living, less spending power is available to the average consumer so it’s harder to follow the best diet that works for someone or items that help with symptoms such as a hepa filter.

This even extends to medical care. Especially with rare diseases and disorders a lot of the most well-known doctors don’t accept insurance and charge heavy out of pocket costs. For example, when I reached out to make an appointment with a very famous MCAS doctor who is only a state away from me, I was surprised to hear that not only he didn’t take insurance but it would cost $5k to visit him. (These were 3 appointments and then $650 for every appointment after that.) That help wasn’t accessible to me because it wasn’t affordable for me. Therefore I got sicker at that time until over half a year later when I finally got to see an mcas doctor who was covered under my insurance.

As I sell items such as pins on here and work on @allergyfriendlybeauty affordability is something that I always keep in mind to make things as accessible as possible for those interested in purchasing those products. 💛

How would you define “accessibility”?

In practice, what does accessibility mean to you?

Follow @joannanobanana for more content on disability and chronic illness! 💛

#ChronicIllness #ChronicallyIll #Disability #Disabled #MastCellActivationSyndrome
#AD If you haven’t heard of @poshmark yet, you’re missing out! 💛

There is something really wonderful about wearing clothes that are comfortable and fall into your personal style which is what @Poshmark offers. This dress is definitely one of my favorite Poshmark purchases. 💛

I really appreciate Poshmark for purchasing clothing at a discount, offering clothes in a way that’s kinder to the environment, and helping me repurchase old favorites that aren’t available anywhere else anymore.

As someone with sensory issues and skin issues it can be difficult to find clothes that are suited to my needs and my style, but fortunately Poshmark offers many choices for me. 

Some of my favorites that I’ve gotten from Poshmark are chenille sweaters (extremely soft!), floral dresses (always a staple for me), and super comfy activewear. 

What are some of your favorite items of clothing? 💛

How would you describe your personal style? 💛

Use my invite code “JOANNAHANAKA” when you download the app to get $10 off your first purchase!

#hbtposhmark #poshaffiliate #fashioninfluencer #fashionblogger
Double tap if you can relate 💛 Chronic illness Double tap if you can relate 💛

Chronic illness affects many different parts of our lives, including our sleeping schedule.

Dealing with pain, taking certain medicines that cause sleepiness, and so much more changes the way that our bodies function.

Rest is important to taking care of our body.

It’s crucial to understand that staying up late or going to sleep early isn’t something that should be judged. Everyone should do whatever is best for their bodies.

Follow @joannanobanana for more content about chronic illness and disability! 💛

Do you have a different sleeping schedule than most people? Do you feel judged for your sleeping schedule?

#ChronicIllness #ChronicallyIll #ChronicPain #ChronicFatigue
Double tap if you agree 💙 Health classes are a Double tap if you agree 💙

Health classes are an important part of education that everyone can benefit from. 

While there are currently some extremely important topics covered during health class, there is still so much more that needs to be talked about with the students.

In my experience with health class, I was never taught about mental health, chronic illness, disability, health insurance, how to choose the right doctor for you, how to have a productive doctor’s appointment, etc.

These are all things that should be addressed at varying levels to students of different ages.

Even a very young student should start to learn about doing what’s best for their mental health.

How many times did your mental health suffer for the sake of a good grade? 

How would your current life be different if you knew the signs and symptoms of your chronic illness before you got sicker? 

How differently would society treat you as a disabled person if they knew disability history and understood ableism?

I want us to raise awareness and have conversations about how we can improve the current system. Should health classes be a standard class year-round? Should schools offer more workshops to teach students about these topics in condensed manners? 

Let me know your experiences/ideas in the comments below! ⬇️

For more content like this follow @joannanobanana 💛

#ChronicIllness #ChronicallyIll #Disability #Disabled #MentalHealth
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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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