This is never the first conversation. It’s not like we snap at someone the first time they show concern. This is usually the final straw after many conversations where it’s not just well-wishing, but constant ‘helpful’ suggestions, after it’s been explained that our condition is chronic and incurable, we’ve seen specialists and had all the tests, tried all the treatments, and are in the management stage – and most conversations have become ‘have you tried this oil/vitamin/yoghurt/diet? Someone on Facebook said it cured their mother’. It’s exhausting and honestly insulting, like we haven’t already tried literally everything out of desperation, and are just too ill-informed on our own illness to have thought of this one common thing that will fix us. Most of us know enough about our illness to qualify for a PhD in it.
After years of that, it becomes hard to stay polite. We mostly still do, but it’s not easy. Venting online with others who can understand helps.
This is never the first conversation. It’s not like we snap at someone the first time they show concern. This is usually the final straw after many conversations where it’s not just well-wishing, but constant ‘helpful’ suggestions, after it’s been explained that our condition is chronic and incurable, we’ve seen specialists and had all the tests, tried all the treatments, and are in the management stage – and most conversations have become ‘have you tried this oil/vitamin/yoghurt/diet? Someone on Facebook said it cured their mother’. It’s exhausting and honestly insulting, like we haven’t already tried literally everything out of desperation, and are just too ill-informed on our own illness to have thought of this one common thing that will fix us. Most of us know enough about our illness to qualify for a PhD in it.
After years of that, it becomes hard to stay polite. We mostly still do, but it’s not easy. Venting online with others who can understand helps.