I’ll continue to say this until I’m blue in the face, but I firmly believe that being diagnosed with an invisible illness in adolescence or your twenties is particularly difficult.
It’s much harder to get people to understand that yes, you may LOOK like a healthy 23 year old girl who just graduated college – but inside you actually feel as though your nerves are on fire, your heart is at risk of exploding right out of your chest, and your joints are grinding with sandpaper every time you move.
The reaction to this is often disbelief. How could this be possible?
Well let me tell ya, if only I knew the answer to that question!
But I guarantee you every twenty something out there has about a billion things they’d rather be doing than trying to pretend they have a fake illness. Like actually living our lives.
But inevitably you will run into plenty of people who come to the conclusion that this is just not possible, that yoga is the cure all to everything, that it must be happening because you are not positive enough, blah blah blah.
I don’t know about you, but this kind of advice – however well meaning the intentions – gets exhausting after awhile. It reminds me of being a little kid and being chastised by a teacher “if you don’t have anything nice to say, don’t say anything at all.”
Sometimes, I just wish people wouldn’t say anything at all.
I don’t choose to share news of my diagnosis because I am looking for advice, product suggestions, or opinions.
I share because it is something important going on in my life and the biggest thing I could use is support. And truthfully, so that I don’t have to try to come up with fake excuses as to why I can’t attend something or why working a traditional job might not be the best fit for me long term.
For me, it becomes a choice of convenience. Battling an invisible illness means that we are constantly going to have fires to put out. There are some (like trying to keep it a secret from your friends and family or worrying about their responses) that just aren’t worth it. Let them smolder on their own and don’t waste your already limited energy.
Telling Your Close Friends and Family
This is something I have been thinking about a lot over the last few weeks.
How do I let people know what’s going on with my health? The thought of just waiting for it to come up organically in conversation over and over is exhausting.
What is the proper etiquette to inform people your world has just been spun around on its axis?
A dinner party? A group zoom call? Is a facebook group inappropriate?
At the risk of sounding like that coworker who generalizes everyone under the age of 35 into the collective group of “young people” – the truth is that most of us who are now in our teens and twenties grew up in an age where news is instantaneous.
I’m not here to pass judgement or give opinions about this, I’m just simply stating an observation.
I know that as soon as something noteworthy happens in my life, one of the first things I do is text my go to group chat and tell them all about it. Whether it be something wacky I just witnessed on my way home or a link to a news article that just broke.
So when it came down to sharing news about a diagnosis that would inevitably alter life as I knew it, I couldn’t figure out why I felt so uncomfortable and unsure about how to share the news.
I spent so much time stressing over the logistics of how to tell people that I found myself frozen when it came to actually doing it.
Here’s What Is Most Important
And then I thought about it – who the hell cares how you let people know?
It’s my daily life that’s impacted. Who gets to determine what constitutes inappropriate other than me?
You should feel empowered to tell people about your diagnosis in whatever way feels the most comfortable for you.
You are not responsible for anyone else’s reactions or feelings about you being sick.
Inevitably, there will probably be people who will be upset if you send an email rather than making a phone call.
I encourage you to remind these people that this is about sharing what you are going through and you chose the method that was the most comfortable for you.
Don’t be afraid to set boundaries. Taking care of yourself is the most important thing and someone who cannot respect your boundaries is not good for your health.
How I Chose to Share the News and a Free Template
Ultimately, I’m choosing to tell the groups closest to me in whichever way is the most efficient and also the most comfortable for me.
This includes a few various forms of communication depending on the group – ranging from facebook group messaging to email to just a plain old text.
Weirdly enough, when I searched on the internet about this there wasn’t a lot I could find.
I will admit that this could be a stereotypical gen-z reaction. I’d rather do things quick and efficiently and with minimal awkward human interaction as possible. However, once again as it is MY life being impacted by this, I think I’m entitled to that (and you are too).
What I really wanted was to find a template to help me determine what to say, but alas, I could not find one.
So I decided that my first helpful contribution to the invisibly ill community would be sharing my own.
Feel free to use the template below to share news of your diagnosis with loved ones. You will obviously need to edit depending on your circumstances.
Template
Hi everyone,
I hope you’re all staying safe and sane while stuck inside! I just wanted to let you all know about what has been going on in my life the past few months. Before anyone panics, I am okay!!
I love and appreciate the support you all give me. I want to share this news with you rather than feel like I am keeping it a secret and it is just easier for me to explain one time than to tell everyone individually.
I have been having various issues related to my health and after seeing multiple specialists have been diagnosed with fibromyalgia. If you aren’t familiar with this condition, it is a chronic condition that generally causes widespread pain and fatigue, as well as sleep, memory, and mood issues. Many researchers believe that this condition is related to how our bodies process pain signals.
This is a chronic illness, meaning that there is no way to cure it, only to try to minimize symptoms. It takes the average person 3 or 4 different doctors and YEARS before getting a diagnosis for fibromyalgia. There are also many conditions that occur frequently in conjunction with fibromyalgia, which means that this is still evolving for me as I am able to meet with specialists who can help understand my symptoms better.
I’m sharing this with you because it is something that will impact my everyday life for the rest of my life, and that is very difficult for me to work through right now. With this being said, I am politely requesting that you allow me to have this time to myself free of distractions such as health/medical advice and opinions unless I come to you first.
I completely understand that these types of messages are only offered with the best of intent – as I have been guilty in the past of doing it myself. Not being able to provide solutions to someone you love when they are struggling can make you feel very helpless. However, when I hear these types of messages over and over, it can end up being hurtful to me.
During a time when I am trying to sort out the best path for myself, these types of messages, while well intentioned, can often leave me feeling drained and invalidated. It can be difficult to hear over and over that my own personal feelings and experiences from living every day with a condition aren’t as valid as a google search or secondhand information. I know that you all love me and want the best for me, and that is the most important thing to me. The best way for you to support me while I figure this out is to just be there for me.
If you are interested in reading, I found this article to be helpful when figuring out how to talk to someone about their chronic illness.
With all this being said, I want you to know that I am hopeful that I will find a way to fit this into my life that works for me and that is what I am working towards currently.
I love and appreciate all of you always! Once again, I am doing just fine and will be okay.
Much love,
Reactions
Truthfully, I was really worried about the reactions I would receive. What I learned is that I think this fear stemmed more from my own insecurities about having a chronic illness.
The responses from my family were overwhelmingly supportive, kind, and loving. I am lucky to be surrounded by people who are so understanding and sincere.
I know that unfortunately not everyone will be lucky enough to receive the same kind of positive responses that I have. It makes me sad that there are some people out there who just won’t understand.
I just want to say that first, my heart hurts for you and I am sorry. If you are receiving any type of negative response to sharing news of your diagnosis, please know that you do NOT deserve that.
While I know you must be feeling hurt and discouraged, please know that there are thousands and thousands of us across the world who understand what you are feeling and will be there to support you.
I hope that this helped you when it comes to figuring out how to share the news of your diagnosis. Let me know in the comments below how you decided to tell friends and family.
