Coping with the Grief of Becoming Disabled/Chronically Ill
Image description: A water color painting. The entire painting is mostly blue with scattered small yellow dots which symbolically appear open to interpretation. They may be small stars or sparks of light. Toward the bottom, a non-gendered body is depicted laying down on their side. End description.
Life has it’s challenges for all of us. It’s known as part of the collective human experience.
Being alive comes with what makes this journey magical, and what would this journey be without the balance of knowing despair and suffering to contrast the wonderful and beautiful happenings?
But there isn’t a lot of conversation surrounding the grief someone experiences when becoming disabled and/or chronically ill unexpectedly. The loss of your idealized future, the loss of being able to participate in the activities that used to bring you joy, the lack of accessibility and accommodations— the apparent lack of equity in a society that favors the able, and more.
Image description: Image of a body of dark water up. A hand reaches out from the water. End description.
It can make you feel so alone in a world you may feel uninvited from participating in. Even if you have some or tons of support, it can be difficult to receive when you’ve been able to handle life independently and prided yourself on it.. you may find yourself assuming you’re a burden. Let alone, some of us who are made to feel this way through certain behavior and/or language— whether intentionally or not, as in through another’s impatience, frustration, lack of consideration, assumptions, etc.
So, what do we do from here?
It’s important to recognize this as multi-faceted grief. Complex grief can really inundate our mind and spirit, while our body becomes enveloped by this silent war. So, naturally, it makes sense if you find yourself too overwhelmed to process the present reality, let alone, start to accept it.
Image description: The 5 Stages of Grief: Denial, Anger, Bargaining, Depression, Acceptance. Each stage is color coded. Below, there is an illustration overlapping leaves using the color-coding of each stage of grief, depicting how these stages are not linear. They aren’t consequential. They are happening all at once and in their own timing. End description.
During a time of despair such as this, it can be hard to find hope. And if this next part I share with you is difficult to receive or feels offensive to the place you’re at in your own journey, please know that it’s okay. I wouldn’t have believed me either. I probably wouldn’t have wanted to. Don’t let me rush your process. But also please know that you’re welcome to share below about what you’re currently facing, regardless. If you look at the image below, where would you say you’re at generally? It’s natural for it to vary by the week, the day and even the moment.
Image Description: This is a chart of what the process of grief may look like in depth. On one end of the timeline reads “the hurt of loss” and at the very end it reads “Loss Adjustment”. In between these two points, in this order, they are listed: Shock, Numbness, Denial, Emotional Outbursts, Anger, Fear, Searchings, Disorganization, Panic, Guilt, Loneliness, Isolation, Depression, “Re-Entry” Troubles, New Relationships, New Strengths, New Patterns, Hope, Affirmation, Helping Others. End Description.
A lot of healing during this process requires patience to allow yourself to be angry, to feel upset and to acknowledge how stressful and difficult things feel. It’s okay to feel lost before you learn to adapt, and it’s okay to feel lost again. There are so many layers to our existence— you can feel confident in your ability to navigate one realm, and totally confused in another. This is also why support is incredibly crucial— to have a team of medical providers, if necessary, and people around you who make you feel safe and cared for, and that their support results in you feeling heard and understood.
If your formerly helpful ways of coping are no longer available to you (for example: you used to go hiking and camping, or out dancing, but now you’ve lost physical mobility to any extent) — it can be especially frustrating. If this resonates with you, naturally, you know you can still lean on the coping skills you do still have, but it’s possibly time to brainstorm some new ways of coping that you maybe heard and forgot about, or hadn’t even thought of. Like, y’all, we’re really out here forging our own path huh? (ˊ•͈ ◡ •͈ˋ)
What comes next… comes down to mindset. By imagining this process as painful and upsetting, it can be really hard to see that it can actually be a new adventure of self-exploration. Letting go of the future we imagined for ourselves and other things that we’re no longer able to do is tremendously devastating. Leaning into the experience with the mindset of curiosity and determination takes time to come to, but honestly changes the entire experience all-together.
It’s not to say it’s not without it’s challenges and difficult times, but if you find yourself consistently stuck in a state of suffering on an emotional level, it may be an opportunity to see if there are additional supports or resources that would help alleviate some of the obstacles you’re facing— whether emotionally, mentally, physically or spiritually, also whether the battles you’re up against are internal or outside of yourself.
In despair, it’s painfully easy to watch life pass us by and let life happen to and around us. It’s painfully easy to feel hopeless… and powerless. It’s up to us to challenge this— and nobody can make us ready before we are… but knowing this, we can start to mentally prepare for this shift.
Part of the healing process involves reclaiming your power and sense of identity and purpose, by taking an inventory of what you are still able to do and what you’re still able to do with accommodations. Which strengths can you still bring to the table? Which strengths of yours deserve to be reimagined than how they were used previously? It may also be helpful to seek new experiences to see your strengths in application, see dormant strengths being utilized in positive ways, and even discover strengths never before known or realized to you previously. This era, when you’ve arrived, is about shaping your life to meet you where you’re at— not in defeated compromise, but in equally as meaningful and purposeful ways.
This has been a bit of a novel, whew. And, this is dancing along the surface of the experience, too. Just another reminder that what we experience is so complex and deserves to be met with our own patience and mercy. All of this said, what are your thoughts?
Image description: A small wooden figurine of a heart that has been cracked down the middle. Next to the broken heart, lies 5 precious, tiny blue flowers bundled together. They are placed on a tree stump. The wood of the stump is fractured, or appears like a fissure of cracks. Description end.
Thank you for the hearts. Does anyone feel like this should be broken down into specific sections? ♡
@zaatarHoney Great to see you back! And, what a great post too I am sure it will help many. For myself I like some of the major points to be pinned and easy to find.
This sentence "But there isn’t a lot of conversation surrounding the grief someone experiences when becoming disabled and/or chronically ill unexpectedly. The loss of your idealized future, the loss of being able to participate in the activities that used to bring you joy, the lack of accessibility and accommodations— the apparent lack of equity in a society that favors the able, and more." is particularly profound.
Thanks for writing!
Listening - One Step At A Time!
@MistyMagic
Misty!!! Hey ♡ Thank you for all of your kind and constructive feedback, and encouragement! You’re completely right, good formatting can make a world of a difference. Thank you for offering a viable solution for a concern I had about this piece. I’m so happy to see you! And, also glad to be back. ⟡
@zaatarHoney. Good topic there is a lot of grief with disability that is hard for people to understand.
@zaatarHoney
This is an exceptional post! Wow. Thank you so much for taking the time to write this. I hope those who need to hear/read this, find this post. It is going to help many whether they have already started their healing journey or they are just about to.
@zaatarHoney
Having experienced an orthopedic trauma many years ago I've had time to reflect on what it means to lose function in your daily activities. It is not an easy road to travel. It took me many, many false starts to get to a place where I could accept what had happened to me. I guess it all boils down to pushing the envelope to see what you can actually do; then exceeding it. It took a lot of self care pep talks to get to where I could function on an adequate level to return to society and the world we live in. You have to be ready to accept the things you know you can't change and work on the ones you can and even exceed what you expected from yourself. It has worked for me for decades now. I still practice the techniques to remind myself that I'm the one who decides what I can and cannot do.❤️
@xandia
Yessss. The way you put this was brilliant and so thoughtful, and throughout your response— I found myself nodding because it was so resonating. Learning how to live in a body that is unpredictably predictable does not lend to overnight resolve, to say the very least. How we feel day by day and moment to moment can vary so much— and I love what you said about “I’m the one who decides what I can and cannot do,” because SO much: this. Nobody knows what it’s like to live in your body— nobody can silverline your sorrow, try to shush/hush or push along your grief process or create assumptions for what you’re capable of or not, or deciding how much pain you’re actually in based on their perception.
Thank you for the time it took for you to share your thoughts here— I have so much respect for your wisdom and the power behind the presence you brought in here today.
This post has been so helpful to me. Because even though the people around me don't really understand, you all seem to and this post shows me. I am sorry for why you understand. I have not done well in my life with self care. Perhaps the lesson I need to learn from this is to love myself as I love those around me. To give myself the same understanding I would offer them in allowing for my changing moods and constantly changing abilities or levels of fatigue. I understand others assuming our recoveries are linear. I thought it would be myself, but it sure isn't. Thank you so much for this post. It is exactly the type of conversation I was hoping to find when I joined.
@adaptableOcean4193
Welcome to 7Cups. ⟡ Your reflection on how this may be a time to learn to love yourself with the same patience, compassion, empathy and encouragement as you would more readily for others is so intuitive— as if your spirit is calling out for it. I wish I could have included this above because you’re so right.
Maybe to fully devote one self toward nurturing ourselves unconditionally develops in knowing our body isn’t our enemy but someone we care about. Your words were so thought-provoking, thank you. ♡ I’m also glad you found us here— you’re always welcome to reach out to me directly, as well.
@zaatarHoney
Thank you so much for your kind words and offer. I may take you up on occasion, and please feel free to do the same. I am left mostly blind at this point so I am hoping for some help here at home, setting up a talk to type, but fortunately all my years of typing have helped somewhat and came back to me rather quickly. I was afraid talking about my struggles would cause me to wallow in self pity but on second thought, I am seeing that it helps me to find ways to work around more of them.
@adaptableOcean4193
That’s such a relatable way to feel about when considering discussing our struggles.. when it impacts so much of our life, it can start to feel like an endless pour of our suffering each time we want to honestly answer “How are you?” I’m wondering if you resonate with this.
I feel like, too, especially when to let someone in… it often requires of us so much explanation for someone to deeply understand what we’re experiencing anyway— like when people mistake “being tired” as interchangeable for “excessive fatigue/chronic disorientation” is frustrating, and as well with other severe symptoms/complications. The weight of reliving all relevant aspects past (nostalgia/grief), present (current challenges/frustration/sadness) and future (fear) can be so discouraging, at times too, so it also sounds like possibly it’s helpful to be in spaces where you’re not only understood and validated, but also surrounded by people who are focused on being resolution-oriented as well. What do you think?
When you mention how you’re proactively setting yourself up by leaning on known strengths and resource/tool seeking to support yourself, I’m hearing “I’m going to figure this out one way or another.” A real warrior energy coming through with you. I’m also hearing you validating your need to have some place to take the armor off to release what is heavy to make room in your mind’s capacity to reflect and strategize further.. ♡ thank you for being here, Ocean. ♡
I love the way you think! I do
n't want to give up, but sometimes feel like it. I often push myself too hard and get a bit resentful that those around me don't see I need help. But then I am upset that they want to do for me what I can do for myself instead of what I can't. I feel like I might be a nag if I mention something for a third time, and give up getting help. I feel a little angry if I let them do for me things I know I can do. I might feel resentful that they don't see what I need when I feel like I am telling or showing them. I despise being resentful or angry with people I love who are trying to help in they ways they know and can but aren't what I need. It makes me angry with myself.
@adaptableOcean4193
Likewise, I appreciate the way our minds vibe. ˘͈ᵕ˘͈
When we’re forced to adapt to a lifestyle where our pride and former confidences are clashing with the reality (and gravity) of our situations, it makes sense that all of these scenarios cause resentment— for them and for yourself— it kinda seems to originate in our frustration that we can’t just do it. Right?
When we’re left stranded, it’s aggravating because we feel helpless and it’s grating to have to ask and it’s anxiety-provoking when we’re helped in effective/ineffective, necessary/unnecessary ways because our routine revolves around either reliving the unnerving fact that we can’t do it ourselves— or reliving the unnerving fact that we can’t do it ourselves. Considering the confines of these circumstances, it’d be more unbelievable if the under and overlying tension didn’t exist. All to say, what you’re experiencing is completely normal— we are just learning how to live in abnormal circumstances. ♡ I can relate to how you feel so much. Our mental anguish easily casts a shadow over our would-be gratitude, and that in itself is so guilt-provoking.
If we were to connect 1-1, I’d wonder if we could identify the actual emotions underlying the anger and if that would be helpful— so it’s not just a mass of tension, but a combination of naturally-occurring emotions that each have a name and ‘reason why’. Sometimes, it’s helpful in learning how to more clearly advocate for yourself and for other resolution-oriented strategies/plans. What do you think?
@zaatarHoney
I already feel intuitively connected to you. I can feel your light shining through. I would love to connect with you in any way that works for you. I am just learning how to use this site, so please be patient with me. I barely see, so it makes things a bit harder to navigate. I think I am the Turtle from the Tortoise and the Hare story. I will get there, eventually, and I will win this race.
@adaptableOcean4193
Yes, of course! I am so sorry, I didn’t mean to come off as rushy-rushy and, yet, I definitely also could have done much better with my communication had I been more mindful. ⟡ Thank you for also being so patient with me. You deserve it in reciprocity. ⟡
You’re a treasure. I feel your light too— especially the light coming off your inner-fire! Ouuu! And, about you winning this race— I believe that, and I believe in you. And, I respect so much the time you are taking to honor your own timing and needs. ♡🐢
Please let me know if you’d like any support and/or help with resource gathering should you find yourself realizing that would benefit you and you’re ready/open to it. I’ve got you. ⋆ʚ(*˘͈ ᵕ˘*͈)ɞ
@zaatarHoney
I hope you don't think I thought you were rushing me in any way, my comments just letting you know that sometimes I'm a little slower than others. I think we get used to immediate gratification from text or messages or almost anything online that we forget that things not immediate just not mean you're being ghosted. Lol. Sometimes it's just a matter of the busyness of the day or like for me, trying to get my brain to engage at the same time I'm struggling to see. You truly are wonderful.
@adaptableOcean4193
I did have worry you may have felt that way but a good worry— because I wanted to make sure you felt comfortable and heard. ♡
That’s what I love about the forums— they allow us to respond at our own pace— as we’d like, as we’re able. You can put so much more thought into your responses too, VS chatting where there’s a timestamp and a “username is typing…” lol!
But you never have to worry about the timing of your responses— whether you reply right away or in a day, or few. Shewwt, you could reply a week or 2 from now— I’m a avid believer of keeping that same energy. We can always pick up where we leave off. ♡ ^—^