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Chronic Illness

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

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.

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Pink and white floral banner for my chronic illness changed me & that's okay
Chronic Illness

My Chronic Illness Changed Me & That’s Okay

by Joanna No Banana

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.

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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

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.

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Banner for Imposter Syndrome Dynamic Disability Edition featuring a wheelchair and workout equipment
Chronic IllnessDisability

Imposter Syndrome: Dynamic Disability Edition

by Joanna No Banana

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!

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Chronic Illness

The Difficulty of Weight Change Caused by Chronic Illness

by Joanna No Banana

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.

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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

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

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