When someone is facing hardship, friends and family naturally want to make it help. Knowing what to do or even finding the right words to console can be difficult. It’s almost an impossible task.
For most people, if they cannot physically see illness, they can’t really comprehend it. Unless I’m having a droopy lid episode, no one can tell that I have MG. None the less I could be suffering on the inside. I get it. I’ve been there. Your friend or loved one is suffering and you want to make it better. You want to say something, anything. But honestly, sometimes silence is golden- especially when you don’t know what to say.
What Not to Say:
1. “It could be worse.”
- Yes. Yes it could be worse. As a matter of fact, thinking about how worse this can get is actually making me feel worse. Comparing my misfortune to another’s misfortune is not a way to make me feel better. Everyone’s journey in life is different. If I’m not allowed to compare success or life accomplishments then why the heck can you compare my ailment?
2. “At least it’s not terminal.”
- Well actually it can be. Again, don’t compare it to something easily treatable like a cough or a broken limb. And try doing some research before you start spewing off little tidbits on things you know little about.
3. “You look ok to me.”
- It’s not about what it looks like to you. It’s about what it feels like to me. And I feel like crap. Whether you can see it or not. You can’t see that my legs feel like jello and my arms feel like 200 lbs weights making it difficult to move. You can’t feel the massive headache I’ve had for days because my vision is blurry without my eye patch. Maybe I look ok to you because I mustered up all the strength and confidence I could find and stepped outside of my house despite the war waging inside of me.
4. “I’m sorry.”
- What are you sorry for? Did you give me MG? Did you make it incurable? There is nothing for you to be sorry for. Why are you apologizing for a wrong you have not committed? People say “I’m sorry” to express sympathy during misfortune (like death). Thanks for the reminder that something unfortunate is happening in my life. Please don’t pity me. Your pity offers ZERO solace.
5. “You’ll be back to normal in no time.”
- Did you miss the part when I said there’s no cure? While symptoms may fluctuate between good and bad days, this is my new normal, my new reality. Life will never go back to exactly how it was. Even if I manage to go into remission, the cloud of MG will forever be present.
What to say
The appropriate thing for me to do would be to give you a list of things you could say to your friend/loved one so that you don’t offend them. I tried to come up with that list….. and I got nothing. I drew a complete blank. There are no “right” words to say, but try to stay away from the ones I mentioned (at least when talking to me).
Again, I know it’s meant with the best intentions. Intention is everything. But I think I’m one of those people who actually don’t mind silence. I’d much rather someone sit in watch tv with me in utter silence as a show of support.
Can anyone out there relate? How do you reply when someone says something that rubs you the wrong way?