If you ask someone to relay their personal experience or experiences with grief, most will respond with an event linked to the passing of someone close to them. Few, if any, will relate their experiences to their own grief after being diagnosed with a chronic illness or after becoming disabled.
Most people don’t even consider that we experience grief as we process the changes that we in the disabled community go through. People often only associate grief with the loss of a loved one, significant other, or someone close.
While grieving after a diagnosis or disability may not equate to the same grief that others may experience, it is no less valid or traumatic.
Anytime our physical or mental health changes and we lose a part of ourselves or our abilities, part of the acceptance and healing process is grief.
We grieve that part, or parts of ourselves that no longer function the way they did. We grieve the ability to perform tasks without consciously having to think about how we are going to adapt, or having to use adaptive devices to complete them. Or, to have someone else do them for us.
We grieve the loss of memory, or our cognitive ability to think and respond quickly.
We grieve the changes to our physical appearance that often comes with disability and can struggle with feeling unattractive, or unappealing to others. This can lead to a fear of intimacy, a fear of being judged, a fear of not fitting in where we used to.
We grieve the loss of friends or even family members who find it difficult to be part of our lives after diagnosis or disability. We grieve the change in relationships of those who feel that their only contribution to our situation is to pity us.
We grieve the loss of passions that we had that we may no longer be able to do, and we grieve the loss of independence, privacy, and dignity that comes with having caregiver support.
We grieve for the dreams of who we worked hard to become in our careers or of our personal goals and accomplishments. We grieve our sense of self and our independence. We grieve all that could have and might have been.
On the outside, most people don’t see what a disabled person has to go through to start their day, let alone complete a full day of disabled living.
For some, the ability to sit up independently on waking has been lost. Imagine waking in the morning and having to wait for your spouse or caregiver to help you sit up.
Imagine needing someone else’s assistance to use the toilet, shower, brush you teeth, and get dressed.
Imagine needing someone else to prepare your food, feed you or assist you with eating, to cut your food like when you were a child, or put your meal in a blender because you can’t swallow solid food.
Imagine not being able to cough, sneeze, blow your nose, or even breathe. Do you even consciously think about these functions?
Am I getting too intimate? Unfortunately, this, and so much more, is the reality of life for many disabled individuals. If you go to my “about” page, you will see photos of me that would hardly give you the inclination that any of this is part of my life.
It has taken an extraordinarily long time to get to a place of acceptance, and to get past the grief. But, the grief doesn’t stay away for long. There are several reasons that it will rear its ugly head time and again. It’s the gift that keeps on giving! For many disabled or chronically ill people, their abilities change, sometimes for the worse, and their disabilities progressively decline to the point that they need to find new ways to adapt, or have to add new items on their caregiver “to do” list.
These ever changing issues along with situations that happen that present us with obstacles and challenges can trigger grief and the longing for who we once were and hoped our future selves would be.
My intention in writing this post isn’t to be a downer, or to speak solely about my personal circumstances. The intention is to bring awareness to the life of individuals with disability and how grief relates to their personal situation.
While grief is a difficult topic of discussion, sharing your grief with others who truly understand can be very liberating. I doubt that many of us in the disabled community have escaped that grieving process. Even those who have pushed past their disabilities to become Paralympic athletes or who have accomplished extraordinary feats that no one expected of them, would most probably have experienced some form of grief at the beginning of their disability journey.
Our personal grief or grieving process can be incredibly difficult for family or friends to understand. It’s also challenging for them to accept our need to try and do as much for ourselves, as independently as possible. Having even a small amount of independence, regardless of making a mess, or possibly breaking something, gives us a tremendous sense of accomplishment and satisfaction. While we may be able to accomplish something one day and not the next, we still appreciate the opportunity to try. If we need help, we will ask, but we appreciate being given the freedom and opportunity to find our own sense of “normal”, whatever that looks like for us.
In certain instances, the grieving process is one experienced directly as a parent or sibling of someone disabled. Imagine a parent who has to raise a disabled child that can’t speak for themselves, or do for themselves. That parent, sibling, or grandparent, will feel that devastating grief for their child. For all the hopes and dreams that they had for who their child might become; they now watch helplessly as that child goes through challenge after challenge to accomplish what we might consider the most menial of tasks…things that most people generally take for granted are lost to many of us.
For many disabled individuals, redefining who we are and what our new reality and journey looks like or means to us takes a lot of trial and error, but ultimately, it’s the difference between existing and quality of life. I don’t think that there are many of us who are, or would be satisfied with merely existing. Even those who are so severely disabled that they rely on someone for complete care deserves to be able to control at least how that care is given to best suit their needs and desires. Taking away that right leads to more grief that often brings on depression.
If you are a spouse or partner, a family member, a friend, or caregiver to someone who is chronically ill or disabled, I hope this post will enlighten you on a subject that most of us who are disabled don’t speak about or share very easily. Grief and how we grieve is so intimate and personal and we all deal with it differently.
Personally, I haven’t shared my own grief because I have so many people around me who constantly remind me that I should stay positive and strong! While this isn’t necessarily bad advice, and we can grieve while still experiencing other more positive emotions, it can be slightly toxic as the grieving process is necessary. It is possible to do both, or experience great positivity one day and then be full of grief the next day, but as I stated, we all process differently and in our own time.
One of the greatest gifts you can give a disabled or chronically ill person is the respect and understanding that their lives have changed in ways that are monumentally difficult for them to grasp in a short period of time, and that the emotional and mental healing process will take time with lots of ups and downs. We may appear to you to be ok and all put together on the outside, while still grieving and feeling anything but put together on the inside.
The grieving process can take on many forms like anger, distance, isolation, and denial, just to name a few.
Compassion, kindness, space, respect, understanding, and a great amount of love are the best gifts you can give someone experiencing and processing their own grief. If we choose to talk about it and share it with you, please be ever mindful not to invalidate our feelings or try to sweep them under the rug. We don’t expect you to understand it all and it’s ok to voice that to us. But expecting us to just shake it off, or pushing positivity on us is not the right message. Asking us what you can do to help, or just offering support by listening is what most of us are looking for. It can be an extremely scary and lonely place for us.
How do you handle the grieving process when it triggers you, or how do you accommodate your loved one who is experiencing personal grief?
Please share your story. It may be what someone who is newly diagnosed needs to know that they are not alone in their time of grief. That the grieving process is necessary and “normal”. It may be what motivates them to continue on in their difficult journey rather than giving up!
You could be that difference in someone’s life!
Thank you,
xo Angel
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