I saw a post that described being diagnosed with a disability or a chronic illness means that you will be going through the grieving process repeatedly and no one ever tells you about that part of being ill.I thought hard about this, and I have to agree with that the statement is true, at least for me it has been. A chronic illness is a long-term health condition that may not have a cure. In some cases, it’s a combo of different illnesses that have made life you may have led prior to it no longer possible.Let’s break this down using the classic Stages of Grief, but put in the terms of someone who is now going to be dealing with a long term or permanent disability or chronic illness.
Stage 1: Denial: When you first learn of a loss, it’s normal to think, “This isn’t happening.” You may feel shocked or numb. This is a temporary way to deal with the rush of overwhelming emotion.
It’s a defense mechanism.When you are dealing with a chronic illness that may allow you to have good days where your symptoms are more manageable than others, you may slide into this one a lot more than say someone who is permanently wheelchair-bound or who has had a limb removed due to NF or other medical cause. There are days, moments where I want to deny the fact that I can no longer do what I used to do, that who I was before NF is gone. She’s not coming back. This is a stage that I don’t struggle with anymore.
I can’t deny I am no longer the same woman I was before that day in July.
I have to deal with it.
Stage 2: Anger: As reality sets in, you’re faced with the pain of your loss. You may feel frustrated and helpless. These feelings later turn into anger. You might direct it toward other people, a higher power, or life in general.
No one however talks about how to handle the anger when it’s not at someone else for dying. When it’s your own body that broke down and failed. When it’s every nerve in your body misfiring making you feel as if you are being stabbed with a thousand blades all at once, or that doing something as innocent as bending over to pick up your ten pound cat can make you cry out from the pain, cause you should not be bending over to pick up the damn cat.I struggle with this one, alot.
I don’t think, actually, I know most people have no idea how much anger is balled up inside of my abdominal area, right where doctors cut out so much of the muscles there save my life. I am angry every day. I want to scream, rage and throw something at whatever deity, creature …thing that decided that I had to go through this. I have to force myself not to let the anger show, or to let it out on someone who doesn’t deserve to deal with my temper which is.. Easily broken anymore.
So, this is me, explaining that if one day you see me, and I look angrier than you normally see me, try to remember, I’m not pissed at you, I’m angry that my body failed and there is nothing I can do to change that. Not because I’m mad at one person for any particular reason, but because I am just fucking angry at the entire idea and I’m not sure if I will ever really get over that anger.
Stage 3:Bargaining: During this stage, you dwell on what you could’ve done to prevent the loss. Common thoughts are “If only…” and “What if…” You may also try to strike a deal with a higher power.
Been here, alot.
“Please, if you just let me walk again…
What if I hadn’t gone to the store that day?
What if the doctors would have caught it sooner..
When I get to this point, I ahve to remind myself there is nothing I can do now about the what if’s.
Stage 4:Depression: Sadness sets in as you begin to understand the loss and its effect on your life. Signs of depression include crying, sleep issues, and a decreased appetite. You may feel overwhelmed, regretful, and lonely.
This is something we face more than people think. It’s not the same as losing someone else, it’s the loss of self. The loss of whoever we were before we got sick. It’s something that some of us face every day, that ….
We’re not them and it’s not really a surprise that a lot of people who have chronic illnesses battle things like clinical depression, anxiety, and tend to become more and more socially distinct from people and places we used to love. There is a higher risk for self-harm and suicide in chronically ill people than most think. Sometimes it’s by self-medicating in an attempt to stop the pain, and in others, they just get so overwhelmed they start wondering if there isn’t any other way to deal with it.
Stage 5:Acceptance: In this final stage of grief, you accept the reality of your loss. It can’t be changed.
Just like in normal grief, people can go back forth, skip steps, repeat them, and there is no true timeline for how someone is going to handle what is happening to them.Being chronically ill means for a lot of us, we are always grieving, even if we don’t show it.
We have to take every single day one by one and remind ourselves that we are still here. We are still fighting, and that we are still worth the fight.