Message to Outsiders about Chronic Illness:
I dedicate this message to the Outsiders – those outsiders who are curious about how to live with a chronic illness. To the Outsiders who have said they think I’m a saint or strong or amazing. I’m not. I love freely and fully those who love me back.
There is nothing worse than watching your loved ones suffer – and draining themselves while trying to put on a game face. This message to outsiders about chronic illness is about how you prepare in case it happens to you. It’s not about asking you for help. It’s not about playing a victim, begging for money, or even wanting unasked for advice. I have a favor to ask. For you to do something for yourself.
If you can’t conceive of being sick for years on end…. consider these things: (don’t visualize yourself there, just consider the challenging life one might lead) My message to the outsiders is to please consider reality. If you want to help, consider actually doing something. Your advice either is too hard to implement in the heat of the moment, or it’s already been done. Telling someone what you would have done, dear outsider, is just making you feel better.
Putting on the Game Face
Trying to look good, but after being so sick for years on end… you know the person physically changed and they’re in a state of ongoing shock and grief — for losses inexplicable but due to the disease of CFS / ME and the dreadful experiences of countless doctors and dollars flying by because this went undiagnosed for years. Doctors gave up. Career cancelled. What the outsiders see is the game face. What the insiders know is it collapses as soon as the energy to handle the meetup is no longer needed.
Changed Lifestyle? More like Overhauled Life
Not even close to what it used to be. Once vibrant, hyper, hard-charging now has to carefully plot what energy will be exerted for what purpose. Is a shower going to drain him? Can he fix his own breakfast? Can he get out of the house? Are his words going to be garbled? Can he think clearly about solving some simple problem? Can he remember to eat once he gets to the kitchen? Can he follow a conversation? The outsider sees what he wants to see: dressed, eating, able to smile and nod and engage a bit — the insider knows he misses half the conversation, answers partial questions, and remembers very little.
What is an outsider?
It could be you if you are distantly involved. It could be you if your friendship has lapsed and you are not reaching out. If you are offering unsolicited advice, questioning the judgement, or even alluding to a thought that you could do better — you are an outsider. As an outsider, you don’t really understand. It isn’t logical. How could someone can be this sick? Some outsiders assume that fighting harder is the solution when, in fact, the opposite is the pathway to a steady state.
You do not know what it’s like to have fought the fight or had a loved one who leads a battle that some have compared to what a cancer patient goes through in the last month of life. You can not fathom what you personally would do if this was your spouse or your child. You might think tough love is a kindness, but the emotional brutality against someone who fights this battle is abusive. Don’t go there. Unless of course you really want to destroy the relationship. NO ONE wants this.
For all the men and women I know, I ask you a small favour. Create your own backup plan for the remotest possibility that this might happen. Pause for a moment, think a bit, and go further than “it will never happen to me”. Please. Please think about what you might do for you and yours.
What could you do?
Here’s 7 Essentials
to helping yourself prepare for the worst. And — they are great ideas to live by anyway.
Private Disability Insurance because SSDI takes forever and you might not have 2 – 3 years to wait, and even then it’s not assured you’ll get it
Pay off your home
Pay off your cars
Get out of debt
Raise your emotional healing to a place where you are strong, healed, and able to deal.
Create a solid pattern of self care — exercise, eat well, practice some kind of parasympathetic relaxation routine daily — it all adds up
Have a list of people you can call — to just talk, be heard, feel a bit of sanity — and feel a lot of love.
Oftentimes, the best gift is to just listen without offering a fix.
For those in this ship:
The best way to assure it won’t sink is to think ahead. No one, inside or out can plan for this madness. I have many “if only I’d known” moments. The truth is no one can predict this.
Don’t ever let the opinions of others — not even your loved one who is ill — destroy your self-love. They don’t know how what they say impales your sense of balance.
I don’t have answers — I have the perseverance, fortitude, and something else that keeps me going. I’m grateful for my great health. I’m grateful that my Dad never let me give up and always encouraged me to keep going, keep trying, keep taking one step forward. Without him pushing me constantly and never letting me give up — I wouldn’t be here writing this.
To my Dad! For without him, I think I’d be dead.