Every single one of us has our own story and our own journey. No two peoples journey will ever be the same. And we all feel differently about how and when we share our journey with new people. It can be a difficult decision as to when you decide to open up to new people about your chronic illness or condition. You don’t want to lead with it because the illness or condition does not totally define you, but it has helped to shape you into the person you have become. On the other hand if you wait to long the new people in your life may feel that you weren’t truthful or withheld information. However in the long run it’s our choice and our journey to share.
We all have friends or family who have a tendency to share our journey with new people as an introduction of sorts. They mean no harm and probably feel like they are making it easier on you by sharing your illness as an introduction. However, it is most often the complete opposite. It can be very uncomfortable or embarrassing to be introduced with your condition. I know for me I don’t want to be introduced to a person or group of people as my condition. The same way you would not want to be introduced by your religion or sexual orientation! Above all I am a person who has a condition. Not a condition that has a person.

In general I have NO problem telling people about my chronic illness journey. But it’s just that, MY JOURNEY! And at times it’s very personal to me and in most situations new people do not need to know about that journey right away. This may be the first and last time I meet someone and in that situation they don’t need to know I have a chronic illness. I want to be known first and foremost by my character. Not the girl who is sick, or dealing with a chronic condition. While my close friends and family may know both sides of me, people who I am meeting for the first time don’t need to know that part of me. I never want people to have preconceived thoughts about me based solely on my condition(s). Sadly, that’s often times what will happen if people are introduced to a condition before they really get to know me for me. It’s just human nature to associate a person who has an illness with people you have known in the past with that condition or stigmas around that condition.

When something someone else is doing is making you uncomfortable how do you bring up the topic without in turn making them feel uncomfortable or embarrassed? For many any kind of confrontation isn’t easy but there are some situations where a discussion is necessary. I for one hate any kind of confrontation and will do everything I can to avoid it. That being said your friends and family can never know how you are feeling unless you let them know. And most of the time in this kind of situation they would never think that sharing your journey might be uncomfortable for you. Simply because they’ve never been in your shoes. They don’t know what it’s like to live with a condition that impacts all areas of your life. In my experience, others need to share my journey is coming from a good place. They want me to feel comfortable and open in any situation. Without realizing that they are in fact doing the exact opposite.

When it comes to having a conversation about emotions and feelings I’ve found that honesty is the best policy. You just need to have an open conversation about how sharing your illness or journey makes you feel. I would definitely suggest making sure that how you deliver the message in a way that can’t be misconstrued! You want to make sure that you don’t make them feel badly about their actions. Simply because in most cases they are not purposefully doing anything to make you feel uncomfortable. When you’re dealing with a chronic illness or condition you learn how to bring the topic of your illness up and when to share your journey. And until you’ve lived in the place where this is an issue you can never truly understand. So when talking to your friends and family try to use an example to explain how it makes you feel. Like maybe explain to them that from now on every time you introduce them to someone you are going to say “Hi, this is Linda she is a bookkeeper and has five kids and is divorced!” While those are an important part of who Linda is, she doesn’t want to be known as the divorced bookkeeper with 5 kids. She wants to be introduced as Linda! And over time she can choose when to open up and share the details of that journey. Yes, I know it’s not quite the same but hopefully using an example like this will help them to see and understand how uncomfortable it is to have their story shared before they are ready.

If you are not chronically ill or dealing with a difficult journey, but have a close friend or family member is I hope this makes you think. You always want to think about how you would feel if you were in their shoes. If it was you dealing with a chronic condition how you feel about them sharing personal information with new people. Would you want to be introduced as Sam who has anxiety? NO! That is most likely not the first thing you want people to know about you. You, like us, would not want a new friend to have a preconceived view of you just based on what they might know or not know about said condition. Basically before you share details of a person’s life and journey you should always think about how you would feel if it was your story being shared for you.

There are so many labels out there in today’s society that we don’t need to add more. It seems as though people are no longer known just by their name. There is always a label or something descriptive attached. There’s Amber the blonde. Or there is Sam who has the triplet girls, or Bob who is gay. While those who place those labels were probably not trying to be judgmental or negative they are inadvertently causing others to judge them before they know the real person. In many cases they were most likely just trying to distinguish you from the other “Tim’s” they know. Ten years ago I never dreamed of being Amber, who has lupus and a mile long lost of other conditions. And I don’t want those conditions to define me. While they have become a giant part of who I am they don’t define me. At my core I am still the same person I’ve always been. I just happen to have a list of chronic conditions that impact me on a daily basis. In most cases people are doing what they think is right in the situation and are not acting to purposely make you feel embarrassed or uncomfortable. They want others to understand me, and to understand why I might do or say the things I do! They don’t realize that by sharing your journey they are labeling you. The only way to prevent this is to have an open and honest conversation. So if you feel uncomfortable or embarrassed by the way others introduce you tell them! They can never know how you are feeling until you take the time to explain your feelings to them! As I always say you have to advocate and stand up for yourself and your feelings because no one else will ever do it for you!

With Love,

Amber