Living with a hidden disability as a brain injury survivor can cause a strain on both old and new relationships. With no visual cues like sticks or wheelchairs, how do you communicate you have hidden disabilities? Especially as a high-functioning person, explaining what you are experiencing to friends or family can lead to a surprise, “Oh, wow! I would never have guessed!”
Common hidden disabilities include fatigue, memory loss, anxiety, depression, OCD, personality disorders, visual impairment, or hearing loss. Fatigue is not just being tired; you can’t always sleep your way back to full energy. Memory loss is not simply forgetting your keys every so often. Without a lived experience, how do you communicate that?
it's like all illnesses, for want of a better word, you can only fully understand it if you've got that lived experience. And I think that's where the problem occurs is because you haven't got that lived experience. I can't get inside your brain. I don't know. I can see what I can see and you can tell me, but it isn't quite the same.” - Jules
Speaking About It
Educating friends and loved ones is hard and often frustrating. Many, either the first time or on multiple attempts, will understand to a degree and become empathetic. Some people though, not so much. It can feel like an exhausting dance to explain every time, when all you want at a party, right now, is to step away. But taking the time to educate how you feel to the right people is beneficial to you!
Hidden disabilities are not common knowledge and, as said, there’s no way of knowing who has it. Communicating can help with those awkward, anxiety-inducing, social interactions. Whether that’s forgetting a name despite being told on multiple occasions or struggling to stay focused on a conversation in a loud environment. The last thing anyone wants to do is offend, but you can only go so far pretending everything is all right.
“It's a shame, isn't it, because we live in a throwaway society where if somebody's car breaks down, and you get a puncture or something; do you throw the car away?.. No you get the car repaired, don't you? There is sort of a mindset that we think, oh that's broken, let's throw it away. Well, your relationship's broken, or your brain is broken. Oh, I can't throw that away. I need that.” - Mark
Acceptance
The sad reality for brain injury survivors is that not everyone will understand. Relationships will strain or drift away. That doesn’t mean it’s final or the end. Friends and family come and go all through life. Ultimately, as a brain injury survivor, you need to focus on yourself, as well as the supportive people you do have. The right people.
You must also accept your new mind, your new life, and the new you. This doesn’t mean to accept defeat, but to accept what you are now… Is not all that bad. No one’s perfect! Surviving a brain injury can be an abrupt change to your world, your relationships, and even your personality. But over time you will come to understand your new self.
It can be hard at first to recognise the symptoms of hidden disabilities. Before you can educate others, you must educate yourself. No one is harder on us than ourselves. Tracking days you are tired, as well as potential triggers, can help identify when and how you are struggling. Our free Fatigue Diary can help you track your days, find a pattern, and allow you to take control of your routine. Once you understand that you are not to blame for these symptoms, you can take the steps forward to live as your brand new you!
“We need reminding, especially in this day and age of Instagram and everything looking absolutely amazing, that no one's perfect. Whether you've got a brain injury or not. No one person is perfect and there's no utopia… You’re doing just fine, and you're just fine how you are” - Jules
Your People
Staying social can be challenging. Eventually, you will build a strong circle of friends and family who will understand you. The littlest moments of understanding can be the greatest feeling and help alleviate that anxiety and stress. Remember, relationships are a journey and takes time to renavigate again.