chronic-illness-support:

therenboy:

warning: death mention

Can we please be more realistic in our chronic illness/disability positivity? I feel a lot of it revolves around “It will get easier. It will get manageable/better. Hang in there! situations change!” while ignoring something very important,

For a lot of us, it doesn’t get better. It doesn’t get easier. A lot of us won’t fight on.

We are uninsured, in poverty, are already in the late stages of a (or a few) progressive chronic illnesses and/or disabilities. For a lot of us, we do not have the ability to ever reach a remission. We are treatment resistant. Our mobility will diminish and diminish. For a lot of us, we will permanently be in flares. And, sadly, a good amount of us will die due to a progressive illness (CF, as an example) without transplants or expensive treatments. A lot of our physical disabilities have already reached the worst they can get. Trauma will do that.

Positivity isn’t simply seeking out a positive outcome or positive change that is seemingly unreachable for a large amount of our community. It is validating the experiences within this community. It is being able to say “this may/will not end well, but we’ll support you.”

 why not say;

• “It may not get better. But try and know that’s not your fault.”
• “I know you’re in the late stages of your disease and/or disability. I’ll/We’ll stick by you. I promise.”
• “This will be hard. And you’re allowed to be weak. We’ll be strong for you.”
• “Things may not change, but that doesn’t mean you haven’t grown or that you haven’t contributed something important.”

We need to stop seeing positivity as a way to only celebrate those who push themselves safely in what they do,  those who reach remission, those who can smile through pain, those who can put their important scarce energy into networking and advocating, etc.

We need to start seeing positivity as a way to support one another and accepting that, even if it doesn’t get better, we can still be there for one another. And that’s okay. That’s positive. 

Grant each other autonomy to approach their illnesses/disabilities as they see fit. 

thank you. I needed this.