I just got a diagnosis and no one understands!

 In Adults, Parents, Teens, Young Adults

The moment you get a diagnosis, a huge number of things can change for you, yet, as astounding as it may seem, everyone else’s lives stay the same. For you & your inner world, the diagnosis often comes as a relief, a “thank goodness there is a name for this” kind of moment. You feel like the pieces of the puzzle of your past, present and future are all falling into place. The picture you see finally makes sense. But then you realise… I just got a diagnosis and no one understands!

I just got a diagnosis and no one understands! | Hypermobility Connect

The people in your life don’t see all the pieces; they can’t see the picture that is forming; they can’t tell that anything has changed, other than you keep calling your condition by a name.


To them, it’s just a name for a condition. It’s not a life-changing phrase.


It’s really hard when this is the case; when the people around you don’t realise just how significant the diagnosis is to you and your inner world. It’s only when you start making changes in your outer world, your everyday life, that people are likely to notice the changes (if they are close to you & observant enough).


From experience, I know that as you start learning how to manage your condition better, you will start making observable changes to your behaviours, and it’s then that the people around you are going to see more pieces of that puzzle.


I think we all go through the phase (more than once) of wishing that our friends and family could really understand what it is like for us; what this diagnosis means to us. But the reality is, they can’t fully understand. No one can. Even though I’ve been through it, I can’t know your exact circumstance; I can’t see your inner world or hear your inner dialogue. I can’t feel your pain. I can empathise, probably more than most because I have been through a very similar experience, but I can’t fully understand.


Try not to forget that other people can empathise too – without knowing the exact details.


Empathy is defined as: “the ability to understand and share the feelings of another”. Empathy is not defined as “knows exactly how it feels and completely understands the intimate details of the situation” (as much as we would like them to).


Empathy is about being able to sense; to observe; to gauge, the feelings of another and draw on something similar from one’s own life from which parallels can be drawn, so that we get a grasp of the feelings that the other is experiencing in that moment.

I think everyone finds greater empathy from people who have gone through similar experiences, because the experience they are drawing on, parallels our experience far more closely. I believe this is often why individuals with medical conditions flock to support groups because they feel better understood by others going through something similar. It’s why teenagers in particular end up with online or in-real-life friends with the same condition – because both of them need to feel understood.


Let’s be real. Not everyone is great at empathising. You’re more likely to get sympathy type comments than genuine empathy, but people who can empathise do really exist; you’ve just got to find them.


That got me thinking, what can an individual do to help people understand their world better when they are first diagnosed with a hypermobility condition?

We can talk about our feelings, our thoughts. We can talk about or express our fears. We can talk about the changes we need to make in our lives to accommodate our condition. We can talk about the changes we need to make to manage our condition better. We can educate people about the condition, and share information we are learning as we move along the journey.


Communicating what is going on for us, both physically and psychologically really is the key to helping those important to us understand our reality. If you struggle to communicate your feelings (or even identify them!) and feel like your needs are therefore not being met, you may like to seek out the support of a psychologist who can help you build your skills.


Most importantly, we can choose carefully who we share our thoughts and feelings with so that we are confident we will receive validation of our experience, not invalidation. As Brené Brown famously says:


“Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: “Who has earned the right to hear my story?”


Check out “Revealing Your Diagnosis” for more tips on what to share and with who.


Try not to set expectations that everyone is going to understand. Carefully choose who you would like to help understand your situation more deeply and focus your attention on helping them see some glimpses of your inner world.


You might like to check out this short video explaining Empathy vs Sympathy (Brené Brown)

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