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Sorry for not writing in a while, I’ve had a rollercoaster few months with med changes- you know how it is.

Something I’ve discovered over these past 6 months since getting diagnosed is that even with a diagnosis, even with a reason for the daily struggles- healthy people still don’t get it. I thought once I got diagnosed it’d make things easier because people would believe me and come to a greater understanding because there is something really wrong, but the sad truth is… they don’t.

But you know- even though that can hurt, it’s okay. Because you learn how to rely on yourself, how to be strong. There are times though, when it all gets too much and you need somebody. This is why I think websites such as TDC are so valuable. You really do make real connections with others who UNDERSTAND because they know what it’s like. They can support you over the internet better than your best friend, your partner or your family sometimes can in person.

That’s not to say you don’t need your best friends, partner or family’s support. That’s invaluable too. But you have to remember that they will say and even do things that hurt you- and it’s not because they are bad people. It’s just that they don’t understand. They don’t know what to say or do. They get frustrated with it too and sometimes, sadly, may inadvertently take that frustration out on you. Remember though, their true anger lies with the illness and not with you.

I guess it teaches you to communicate better. You have to be honest and vulnerable at times. Sometimes you have to ask for help when you really wish you didn’t have to. You have to accept help when you wish you didn’t need it.

All in all, tough to deal with though it is, chronic illness can be a great teacher. It can teach you how to be brave, strong and compassionate- both with yourself as well as with others. It can teach you how to be a great person even when you feel weak and useless. It can teach you better communication with others- because you can’t make anyone else understand. All you can do is learn how to help them to.

The sad truth is, you will lose friends, because many people don’t have the patience to stick around in a friendship with someone who can’t do the same fun things and who often has to cancel plans last minute. I think this boils down to a trust issue- they can’t trust you to do X,Y,Z with them or turn up to P, and because they don’t understand what it’s like for you to not be able to trust your own body, they distance themselves from the relationship. They stop trying. They don’t know how to show support, so they don’t.
The sad truth is, relationships will be more challenging and may even end.
The sad truth is, friends and family may not believe you could really be suffering what you are indeed suffering.
It’s sad and it’s true that most- perhaps even all of us to some extent- have to deal with that as part and parcel of dealing with chronic illness. But…

The beautiful truth is, there are people who will love you regardless. Who will see through the illness to the person that you are. Who will love you even more because of your inner strength and beauty. Who will see truly what an inspiration you are.
Your job on this journey is to find these people and when you do, make sure they know how much they mean to you. How what they do helps. How special they are. Because truly, people like this are rare. That’s sad because it means we have to suffer a lot of loss, hurt and disappointment from interactions with those more common people who let us down. We suffer loneliness, isolation, emotional pain. But that’s what makes it all the more meaningful and beautiful when we do find people who stand by us.

So- to those people in our lives who we can count on to stick around- a heartfelt thank you. And for anyone who’s lonely and isolated out there- let one of us be that person for them. Reach out and connect- isn’t that what life is about? At least one good thing about being chronically ill is that we are learning how to make true, meaningful and lasting connections with other people. Connections based on true friendship and real love. Let’s celebrate that with gratitude for some of the wonderful lessons we are learning in the midst of the struggles we endure.

To true friends!

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Laura Posting- on a spree today- even after I was hiding under my covers earlier all snotty and crying due to being upset by both my brain fog (frusrating and frightening) and someone else’s reaction to it (blaming and shaming me despite the fact I can’t help it, thus making me feel even worse)!

Despite getting upset at times due to symptoms or other people’s ignorance and harsh behaviour (I’m doing okay now- sometimes you just need to have a good cry!) I am a positive person who is determined to look on the bright side and make the very best of things. So I didn’t want to leave the blog updated on a sad/angry/frustrated note- so to uplift things again, I want to share this really beautiful and quite frankly amazing video made by my friend Kyli, who is just awesome at making videos that are visually beautiful and touch the emotion in those of us who have suffered, whilst at the same time giving HOPE.

Thank you so much Kyli for all that you do, have done, and will continue to do! If it wasn’t for this illness I wouldn’t even know you, so that’s something to put in the plus column for POTS! xx