“What I wish you knew…”

Brain injury is misunderstood by many people. You don’t just ‘get over’ brain injury. It affects your whole life, your relationships, who you are as a person. Nothing is the same anymore.

Brain injury is a lifelong battle with very good days and very bad days. If you know someone living with a brain injury, be patient and compassionate. They need your support more than you know. Especially on those very bad days. Be kind.” -Traumatic Brain Injury Support Group

When you tell me, “You look great,” I wish you could see how messed up and disjointed I feel on the inside, or the fact I probably just had about five hot flashes before you saw me. I wish people saw me at 3am when I wake up with chronic pain in my head and my jaw, or that I desperately need to ice and heat my neck at least twice a day to be able to get through. I wish people saw me five minutes before my carefully planned and time-appropriate shower verses five minutes after I’ve been stripped of all the energy I had left in me, or when people say, “You’re so strong and have such a positive outlook,” I wish you saw every single one of my breakdowns where I tell myself I’m done. But then, I think to myself, the only reason why I’d want anyone to see all those parts of my recovery would be because I feel like I have to somehow justify or validate how I’m feeling and my diagnosis to some people—and why the hell do I feel like that? Why do we all get so caught up in worrying and wondering about what other people think? And why on earth, in the position that I’m in, am I making myself feel this way?

My injury is real, my feelings are real, my symptoms and limitations are real, and most of these experiences and setbacks happen behind closed doors. I know my body, I know what I can do, I know what I can’t do, and I also know that activities on both of those lists can swap and change very easily, depending on the day I’m having. The only person that I’m going to worry about when I think about how my body will react to different settings and tasks from now on is me—and I’m so okay with that! Because I know that the people closest to me make an effort to understand as much as they can, and would never judge any of my decisions throughout this whole process. Every decision I make is carefully planned down to the very last detail.

So, that’s enough of what I wish people knew, because in all honesty, I believe that the people truly interested will ask questions, and I will be 100% honest and open with every single one of them.

Now, I’d like to talk about how people can support not only me, but others living with a brain injury. Lucky for me, I belong to a supportive group of individuals across the world living with all forms of brain injury, so I asked them a few questions:

What would you like people to know about how to best support you?

“I’ve found a big thing for others to try to understand is that they need to be patient. As do we, for our brains to heal, and for us to learn how to work with our new brains.”

“Educate yourself about what is happening if you don’t understand. Talk to people, join a group, Google. Or fake it, even if you don’t believe the person or you’re frustrated, just make me feel like you believe I’m not going crazy.”

“I would say to support a TBI survivor, accept them how they are now and don’t expect them to be their old self. The TBI survivor is kicking their own ass hard enough comparing themselves to the person they were before, they don’t need others contributing.”

“This is an uninvited change. We didn’t want to change our personalities, we are not being dramatic or lazy, and we don’t want to complain all the time. We also never fake it! When I say I can’t do something today, I am not being lazy trying to get out of activities or tasks, I’m saying that I honestly cannot perform or go to that social outing today.”

“I wish I had a scar on my head. The invisible signs of a TBI (memory and concentration problems, fatigue, insomnia, chronic pain, depression or anxiety) can be more difficult to live with than a visible injury. If I had a scar on my head, it would help me feel validated or better understood. We may look normal, but shrugging off the invisible signs of brain injury is just belittling. Please don’t do that.”

These are raw, honest and heartfelt responses from individuals living with the diagnosis of brain injury every day for the rest of their lives. I’m not the person I was before my accident. I live a “new normal” life, adapting the best way I know how. As the months go by, I do get glimpses of her coming back—my personality, my sense of humor, and all the things that made me who I am. However, not going entirely back to the “old me” is not all negative. I’ve found joy in new activities and strength I didn’t even know I had. To be honest, I feel like I’m becoming a better version of the person I used to be, fresh outlooks and all.

It is so unbelievably frustrating living with an injury that the majority of the time is so invisible to others around you, but for me personally, I don’t need 100 text messages or calls a week from people asking how I am. To have people in your life that do genuinely care and make an effort to show you they’re trying to understand is the most amazing feeling. I think to myself, “Okay, they’re hearing what I’m saying, not judging me, but rather taking it on board and trying to find out more information to help me.” I have one friend who will Google all the things I’ve been talking to her about over text message before she sees me, so that she can acknowledge and talk to me about them in person. BEST FEELING! I actually feel like an absolute crazy person most of the time when I talk about some of the things I’m feeling or what’s happened lately, and if I feel that way in my head, I can’t imagine what other people are thinking right now—so, it really calms me to know that my friends aren’t brushing off my difficulties, but acknowledging how I’m feeling in such a comforting way.

However, It goes both ways, and I’m always going to be there for my friends, no matter what’s going on in my life. My friends will cross my mind many times throughout my day. I think about them constantly. However, the process of taking those thoughts and putting them into action by reaching out to them is often really difficult for me. And I honestly can’t tell you why. It sounds really silly saying that sending a text message can be really hard, but it is sometimes. When I can do it, it’s the best feeling because I immediately feel more connected with the outside world, and I want my friends to know how much they truly mean to me. I know for a fact that every single one of my family members, friends and relationships have been affected dramatically this last year. I sent some of my friends a couple of questions asking them what they have found hard about this last year and my injury. Here’s what they had to say:

What has been the most difficult part of my injury?

“I find it hard because I don’t feel like I’m there for you enough. I feel like some of the best support I can give you is just time to sit and chat or just someone to sit next to you in silence.

Unfortunately, I know I haven’t been able to do that with you anywhere near enough.”

“Honestly, your diagnosis is complicated and difficult to understand. Even though you look fine, you’re not, and I can tell when something’s not quite right because I can see it in your eyes. I find it frustrating that there is no timeline or date when things will get better. This scares me.”

“We can’t have nights out anymore, go to the movies or stay up late, but that’s not going to stop me from hanging out with you or being there for you. I do my best to consider where we are going to eat, is there going to be too many people, is the drive too long, is it too loud or am I staying too long at your house, should I leave now…”

“I find it incredibly hard to find the words to help make you feel better and to be supportive. I didn’t know when to message you, did I not message enough? Did I message too much and was I being annoying? If I said ‘head up, it will be okay,’ would that actually help or was I just being annoying?

“As a friend, I have felt many emotions. Sad, because why did this happen to you? Mad, because why did you just ignore me and pull away when I went to give you a hug? Why did you not talk to me? Annoyed, because no matter how hard I tried I felt what I was doing to help wasn’t helping at all, and I didn’t know what else to do. Scared that I would say the wrong thing when I didn’t want to upset you. Heartbroken, because you’ve had to go through this incredibly hard, tough journey and it all happened from a fall, while you were doing something you love. But most of all, I’m proud of you.”

“I wish I could be in your shoes. I wish I could understand what you are going through, both the good times and tough times. I wish I knew so I could support you and be a better friend.”

“I find it hard because I don’t know as much as I would like to about brain injuries and how the brain functions. I often don’t know the right things to say and that disappoints me that I could be letting you down.”

“This process and your diagnosis has already taught me so much about brain injuries. But I would like to know more about the type of brain exercises you do and other ways I can assist in your recovery.”

I feel like there’s a communication mismatch. Not just with myself and my friends, but with brain injury and the community, in general. How much better would individuals feel if they knew the community or the people closest to them were thinking of them, but they, too, were so confused about their role in the recovery process and about what to say? We could fix this communication mismatch together!

I’m so lucky, because I know I’m surrounded by people who care and will be there for me, just as I want to be there for them. I am, however, constantly reminded that some others are not so lucky, and don’t have such a big support system around them. So, the next time you see or reach out to your family members, friends, or some stranger on the street, give them a smile, open a door for them, send them a heart or just be present with them. We have no idea what others in our lives are going through, and small random acts of love and compassion could make someone’s day! Be kind.

“Too many people have a vision in their head of what a disability ‘looks’ like, and if you don’t fit that vision, you don’t get the appropriate response.” – Alysha Pellizzari, Speech Therapist

Lauren Spear

Lauren Spear

My name is Lauren Spear and I am a special education teacher from Adelaide, South Australia. In May of 2018, I suffered a mild TBI after a workplace accident. I strive to educate and create more awareness of brain injury across the wider community by documenting my personal journey on my blog website, The Orange Butterfly.

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