A more bitter part of me wants to demand that, before anyone gives anyone with a chronic or enduring illness advice about what they should be doing, they should have to live through my past couple of weeks before giving it.
Now, before anyone panics, it’s just been a tough couple of weeks. I’ve been caught in what I call an “autoimmune loop,” first triggered by allergies, then flowing into everything from debilitating insomnia to blood sugar spikes and crashes. Good times…
I will grant, that having endured that, I’m particularly sensitive when people start throwing around, “Well, all you have to do is…” advice. I admit it. It pisses me off. After spending two weeks feeling like you’re a combination of drunk, high, coming down with the flu, and hopped up on way too much caffeine, that kind of advice hits wrong.
But I’m also listening, and in the course of listening, I have my own advice. I understand those of you trying to help people like me mean well. You sincerely want me to feel better. You believe you have answers, and the fact is that you do.
You’re also not listening.
Almost every conversation I’ve ever had with someone who believes they know how to fix me revolves around a single premise: everything I have to say about why their advice is a struggle is an excuse. I’m here to tell you, no, it’s not.
Yes, I can be doing more than I am. Yes, sometimes, I have to push through the terrible consequences of my current state of health in order to make it better than it is. That is true.
It is also true that, when my blood sugar crashes while I’m walking around the grocery store, so I have to cling to my cart like a lifeboat, and thank God my wife is with me to drive me home because I might not have made it otherwise, and I’m still shakey more than 24 hours later, it’s not an excuse. This stuff really happens. It really does limit what I am able to do. I have to keep in mind that every expenditure of effort I make comes with a cost I have to pay, sometimes for days. That’s not an excuse. It’s reality.
All I am asking you well meaning people to do is to understand that. Modify your expectations by the reality of the health I have right now. Not the theory of how healthy I could be. Not with a guilt trip about how I’m unhealthy because I did it to myself. With the fact that, right at this moment, what I’m experiencing is what is.
Help me with my reality. That will actually help.
Read more at my The Rambling Road weblog…