People hate labels, I know that. But sometimes I wish I had one.
Within the spoonie community, I see a lot of “medical labels” so to speak. Check out any spoonie on Instagram and you’ll find a label (or five) in their bio signaling to other people to which “group” they belong.
Fibro fighter Zebra warrior Endo girl Crohns warrior ME sufferer… …pots, lupus, eds, fibromyalgia, gastroparesis, GBS, CIDP, Crohns, even people who are still undiagnosed have their own label (spoiler alert, it’s “undiagnosed”).
As someone who has lots of chronic pain due to a birth defect (my vertebrae didn’t develop correctly) I have to admit… I wish that particular problem had a specific tag as well.
It turns out though, that when your symptoms are kinda vague (lower back pain) and super general (doesn’t literally everyone have that?!) a nice unifying label just isn’t in the cards.
The benefits of labels
Let’s talk about some of the positive consequences of labels though. Because yes, thousands of people and blogs and quotes will be screaming at you that labels in general are bad. And yes, they definitely have some downsides. But most things aren’t one hundred percent evil.
#1. Something concrete to tell people
A label gives people something to google. When you have an official diagnosis, you can easily refer friends and family to the google-box if they wanna follow-up on the info-bomb you just dropped on them.
This would come in especially handy in situations where I only have so much time to spend with people. If I find myself at someones birthday (because I have a good day chronic pain wise, so I get to go!) I would like to actually talk to people. I wanna hear about your life, not give an hour-long lecture on my stupid chronic pain.
Seriously though, chronic pain is my everyday reality, please let’s talk about fun things! Have you seen The Good Place finale yet? How about Frozen 2? Discovered any new podcasts lately? How are you doing, no – don’t tell me how your kids are doing, how are you doing?
#2. A group of peers
Due to the fact that I’m not a part of any of those clearly defined groups, I feel a little left out on the socials sometimes. People who share a diagnosis have an instant connection – or at least that what it looks like from the outside.
They know what the other person is going through. They know it in a way that people outside their diagnosis-group just won’t. True understanding and empathy is different than someone who is trying to understand (even if they are trying their best, bless them).
And I feel like a bit of loser to even admit this, but here it comes, plain and simple: I wish I had that.
I may be a spoonie, and I know I can connect with other spoonies about that, but it would be nice to have my own “spoonie-group” to belong to.
Sidenote: obviously I realize that illnesses have different ways of manifesting. Two people with fibromyalgia can have different symptoms, meaning that the ‘fibro-warrior’ label is in no way a guarantee that they know each other’s struggles. It would just be nice to be part of a group is all I’m saying. To know that there aren’t just other spoonies out there, but spoonies who are dealing with very similar experiences.
#3. Easier to tell your story when you meet a new doctor
It’s no secret that doctors don’t actually have time for you.
They are probably already running late AF on their schedule by the time you finally get called into their office. I don’t need to tell you that, you were the one in the waiting room for over an hour (which really makes you wonder why the fork they told you to get there 15 minutes early but whatever).
So basically, you get 10 minutes, is what you get. And when you meet a new doctor – that is not enough. I mean, it isn’t even enough when you actually have one of them nice, clear diagnosis labels. As much as western medicine tries to ignore this, everyone’s situation is different and you need TIME to tell them what’s up.
Still, it would be so ama-a-a-a-zing if I could walk into a doctors office and say: ‘Hey whatup, I suffer from ____.’ (even more amazing would be to not suffer from anything at all. Oh well. One day. Maybee..?)
Let’s start this one of with a real life example:
When my brother in law told people he had gotten a case of the back pains, his friends and co-workers were all like, ‘oh that’s too bad bud. Annnyway…‘ and then the moment was over. Back to business.
A couple of months later though, his problem was finally diagnosed. So he updated his complaint, told people he had a hernia, and straight away everyone was like: ‘Nooo! Really? Oh, that sucks man! I’m so sorry. Yeah, I totally know what you’re going through, my aunt had that and she was in so much pain for weeks… and blababla you get what I mean.
Just like that, his pain was legitimate. It was real.
He doesn’t just have some random back pain (we all have that whatever). He has a hernia.
And I know what you were thinking, when I described the responses he got once he had a diagnosis.
Or at least if you’re a spoonie, you were probably thinking something a long the lines of: stop comparing my situation to some rando in your life – I DONT CARE ABOUT YOUR EFFING AUNT. Yeah, I know. I feel ya (cause my aunt went through that exact same thing).
The point of my example though, was that people at least accepted his pain as real. And they might bring up all kinds of stupid solutions and useless tips, at least you’re no longer ‘that person with random/imaginary back pain’.
So as much as it sucks have a disease, an illness, a disability or chronic pain… how the people in your life react to it makes a big difference. Just like it makes a difference if you have a group of peers to belong to.
I think. I don’t actually know cause again, I have no group (drama emoji!).
But I’d love to hear from other spoonies out there. Feel free to correct me if I’m wrong about this, or commiserate with me if you also feel this way sometimes.