In the recent upset of the famous actor slapping the comedian at the Oscars, some in the rare disease community, including those with alpha-1 antitrypsin deficiency (AATD), are empathizing with his wife. The visibility and sensitivity of the issue—a joke made about an alopecia patient’s bald head—strikes a chord with many of us in the world of serious or rare medical conditions.
I know the doctors who have received my loyalty are the ones who listened well and wanted to make the clinical environment as safe as possible. For some reason, they had a level of understanding that made me feel more at ease, so I keep coming back.
Rare disease patients are unlikely to agree on whether the actor’s words and behavior were appropriate. I can’t speak for all of us, but we do all have one thing in common: we never asked for any of the conditions we have.
We can win the battle in our minds, reminding ourselves we are not victims. We are often victors simply because we don’t allow the disease to define us. We win by being strong in spirit, not in our physical bodies, though some have won that war.
Read more about therapies to treat AATD
I have a different problem than the one joked about in full view of millions. Sometimes, no one in the room knows I am sick except me, because it’s obscure. I sometimes simply can’t breathe very well and have pain and limitations related to physical stamina.
So I struggle on a different level, but none of our issues are better or worthy of being the butt of jokes. It may not seem serious to others, but it can be for us. We deal with our limitations on a daily basis.
The lady on the receiving end of the joke could be taking the whole thing very well, for all we know. Many sufferers are exceptionally strong and don’t take things personally.
I have a boyfriend and if I was feeling bad about being laughed at for my condition at the Oscars ceremony, I would want him to, at the very least, try to help me feel better. He knows not to joke about that, thankfully.
I may not want him to make a scene but I would want to feel protected for sure. My boyfriend is considerate and empathetic, so I am guessing he would do alright.
As much as we may dislike standing up for ourselves, we know we have to and if we don’t, we are failing ourselves. Yet, it still feels great to have someone listen and empathize with us. If you have a patient in front of you with a chronic disease, this is a giveaway: underneath their tough exterior, they want respect.
There have been a few rude doctors here and there, but I think any successful doctor will be very respectful. I have seen people flock to doctors like this. They will be firm, but they know how to listen.
You don’t have to agree with the whole scene’s ethics to see my point of view, which is basically, it’s nice to have someone in your corner, who empathizes with me, even knowing they will never fully understand my position and struggles. It’s a bit of a risk. You might fail and inadvertently do the opposite of what you intended.
The results are usually meaningful. If not, those patients might have the mature sense about them to look beyond that and see that you’re trying. Many of us with complex conditions would appreciate it.
It all comes down to respect. If I have an embarrassing mole on my hand and someone laughs at it, it will sting for a while and I’ll be tempted to lose my sense of self-respect; the other person has none for me. In the end, it’s my choice.
The whole scene is controversial for so many reasons. Thankfully everything turned out OK in the end, though, as the lady involved is still an amazing lady and she handles herself with a lot of grace and the comedian is still an amazing comedian; it looks like they both won out in different ways, and we all can have a good takeaway, too!