Chronic-Land is a different kind of place: every member of the community has a diagnosis of some sort, or lives with substantial symptoms of something yet diagnosed. It's members are on medications, use mobility aids, use heating pads, are on special diets, and have adapted their lift to the best of their ability to have the most function possible. Chronic-Land covers the world, and nobody actively seeks to be part of it.
Members of Chronic-Land meet a lot of people after you've gaining citizenship. This is an outline of some of the people I've met after joining, but it's also a guide to others.
Some of these people you'll meet have been part of your life forever, others will be new introductions. But when it comes to being chronically ill, disability, and/or an invisible diagnosis, I've found that they fall into a couple of set categories:
1. The Disbelievers
These people don't get it. Maybe you don't "look" sick enough, or you don't need to use a mobility aid all the time, or have a diagnosis that is made primarily by exclusion. Whatever it is, there is a part of them that thinks you may be faking it or that it just can't impact you on a serious level. Like Tom Cruise, these people think that a healthy amount of exercise and vitamins will cure you, and they're frustrated that you don't get that.
2. The Magic Healers
These people get it... sort of. They understand that what you have is a real condition and that it definitely impacts your day to day life. But lucky you, they know just the thing you need to do to heal or cure it! Usually it comes from a good place, so I try to listen, but most of us know that there's no amount of salt lamps, vitamins, and gluten free dieting that will cure us of our life long condition.
3. The Sort-of Friends
These people get it, but differently than the Magic Healers. They know you have a real diagnosis and that it impacts your life, however, they would prefer that it doesn't impact theirs. They invite you to participate in activities with them, even ones they know you can't participate in so you feel included (we always appreciate the invite). They want you to be part of their life, but they aren't open to adjusting some of their activities so you can more fully participate or join in at all. You may get side eye when you bring a heating pad or food you know you can eat when you go to their house. They care, they really do, but they don't fully get it and may get frustrated by your limitations. They miss the old you, and are struggling to get the new version.
4. The Keepers
These are magic souls, the people who not only get it on a deep level, but who want you to be an active part of their life. They invite you to things that they're doing, and often adapt the event so that you can be an active participant. This may mean letting you pick the restaurant, collaborating about start time, or picking board games over disc golf. They may even have a heating pad ready for you at their house and ask you what they can make that you can eat. They not only say that they care and want you in their life, they show it.
Not everyone will fall into one of the categories above, and some people may shift over time from one category to another. There may be even more categories that I haven't identified.
A former boss had a sign that said "Life is too short to wear uncomfortable shoes", well, life is too short to spend any time convincing people you've got a chronic illness.
Hold on to the good ones, try to teach (and not preach) when you can, and leave the disbelievers behind.
Members of Chronic-Land meet a lot of people after you've gaining citizenship. This is an outline of some of the people I've met after joining, but it's also a guide to others.
Some of these people you'll meet have been part of your life forever, others will be new introductions. But when it comes to being chronically ill, disability, and/or an invisible diagnosis, I've found that they fall into a couple of set categories:
1. The Disbelievers
These people don't get it. Maybe you don't "look" sick enough, or you don't need to use a mobility aid all the time, or have a diagnosis that is made primarily by exclusion. Whatever it is, there is a part of them that thinks you may be faking it or that it just can't impact you on a serious level. Like Tom Cruise, these people think that a healthy amount of exercise and vitamins will cure you, and they're frustrated that you don't get that.
2. The Magic Healers
These people get it... sort of. They understand that what you have is a real condition and that it definitely impacts your day to day life. But lucky you, they know just the thing you need to do to heal or cure it! Usually it comes from a good place, so I try to listen, but most of us know that there's no amount of salt lamps, vitamins, and gluten free dieting that will cure us of our life long condition.
3. The Sort-of Friends
These people get it, but differently than the Magic Healers. They know you have a real diagnosis and that it impacts your life, however, they would prefer that it doesn't impact theirs. They invite you to participate in activities with them, even ones they know you can't participate in so you feel included (we always appreciate the invite). They want you to be part of their life, but they aren't open to adjusting some of their activities so you can more fully participate or join in at all. You may get side eye when you bring a heating pad or food you know you can eat when you go to their house. They care, they really do, but they don't fully get it and may get frustrated by your limitations. They miss the old you, and are struggling to get the new version.
4. The Keepers
These are magic souls, the people who not only get it on a deep level, but who want you to be an active part of their life. They invite you to things that they're doing, and often adapt the event so that you can be an active participant. This may mean letting you pick the restaurant, collaborating about start time, or picking board games over disc golf. They may even have a heating pad ready for you at their house and ask you what they can make that you can eat. They not only say that they care and want you in their life, they show it.
Not everyone will fall into one of the categories above, and some people may shift over time from one category to another. There may be even more categories that I haven't identified.
A former boss had a sign that said "Life is too short to wear uncomfortable shoes", well, life is too short to spend any time convincing people you've got a chronic illness.
Hold on to the good ones, try to teach (and not preach) when you can, and leave the disbelievers behind.
No comments:
Post a Comment