I think the most important thing in anyone’s life is a good support system and for those of us with chronic illness it can mean the difference between being able to get through another day with our sanity intact or.. well, not.
People are funny, though. Most of them generally like to be around happy, healthy people as much as possible (go figure!) and you learn quickly who your real friends are when you get ill, especially if it lasts more than a couple of weeks.
Even “best” friendships can disappear overnight during health crises, but that’s human nature.
The first step is ‘Learn to Let It Go’.
Stressing over things like broken relationships can make us incredibly ill and only complicate things further so we really have to learn to let things go, including where we thought our lives would be or were headed and sometimes, sadly, even people.
Then there’s family and the whole ‘blood is thicker than water’ to complicate things. That’s true in some families but what if you come from an extremely dysfunctional one like I did?
I haven’t had contact with most members of my birth family in decades. Growing up I wasn’t close to any of my 30 plus aunts and uncles or hundreds of first and second cousins, either.
Some of us just weren’t fortunate to be born to good, decent people and you really need good, decent people in your support system.
Find good people to join your “inner circle” support system.
They do exist, but how do we find them if we weren’t blessed with a good family and an extended network to draw from? First, by becoming good, decent people ourselves. Good, decent people don’t waste time on bad, indecent people and why would they? It’s definitely not a healthy choice to surround yourself with not-good people so that’s a first step I learned myself in life thanks to the lousy cards I was dealt.
To attract good, decent people first I had to reprogram my thinking to become more like them.
A positive attitude is one of the first steps towards building a healthy everything, including your support system.
Then you have to put yourself out there by finding things that interest you and also draw in good people, which isn’t fun or easy to do when you’re ill.
It’s much easier now with online social media to make contact with the outside world but online interactions aren’t always ideal, or healthy, even. Sometimes they can be extremely unhealthy, to the point of detrimental.
Some people like myself avoid sites like Facebook and prefer to foster real life relationships or have minimal or superficial interactions online. We are sometimes considered the Luddites of our generation and it’s thought we don’t really want to change with the times. Either way, it is a choice that limits our ability to bring more people into our support system.
Whether online or in real life (or both), finding the “right” people takes time and isn’t always easy.
While you’re looking, find people (doctors, friends, neighbors, co-workers) who really believe you.
Because it’s an “invisible” disease, it’s hard to find people who believe that you are sick with mast cell disease. Even many doctors won’t believe it, unfortunately! But it is so important that we are believed because it can literally mean the difference between life and death for some of us.
It’s really, really important to have people who believe you and who care, especially in cases where you may need them to spring into action and do things like inject you with your epipens when you have anaphylaxis and pass out and can’t do it yourself and/or call 911 for you.
Think of this: if they think you are faking, would they do the right thing in time to save your life? Probably not.
Try to find people who are thoughtful and kind, too.
Support isn’t just being ready to call 911. It’s not just listening to us bitch about our disease, either, although that’s important, too. It’s things like making sure you have and remember to take your medicines (and reminding you why you need them when the brain fog is so thick you can’t remember that you even have mast cells let alone mast cell disease). Or drawing you a warm (not hot!) non-triggering, non-bubble bath when you need it most.
I have a kind, thoughtful husband who does all this and more and I can’t tell you what a difference he makes in my day and in my life. If I had to battle this all alone it would be very, very difficult, if not impossible.
Still, I know it’s not easy for him. He has a wife and a son who are very sick at times and he shoulders a lot of our burden. So in return, we try to support him back in as many ways possible. I try to show kindness to everyone in my support system, including my doctors and nurses, but he gets the most effort.
They all deserve more than a bit of kindness for the support they’ve shown me through all this!
It’s important to reciprocate the support your loved ones and even your doctors and nurses offer you, because they need some appreciation and TLC, too!
Definitely give support to those who offer it to you as well as those who need it whether they are part of your own support system or not. We all need one another and we are all in this madness called being human together.