I have received questions about what advocacy looks like for loved ones and for those suffering from the effects of traumatic brain injury (TBI). This is incredibly important, as I’ve learned, following TBI. My needs increased and I needed help in ways I couldn’t possibly imagine. I struggled with communicating these needs to my loved ones, typically out of a feeling of guilt or shame. Accepting help can be hard. The goal of this blog is to help other TBI sufferers come up with strategies for better self-advocacy and to also help enlighten the loved ones of those suffering this seemingly invisible injury to better understand and also provide strategies to advocate for them in their respective recoveries.
It’s difficult when you’ve gone from being fully independent to being dependent on others. It can be so exceptionally draining to explain why you may need help with something when you appear to be “fine.” I’ve learned this is so important, because the misunderstanding that already exists will only continue if you aren’t honest about your experience. It’s hard when these needs may not be visible to the eye. It’s interesting because I experienced so much more understanding, empathy, concern and compassion after my shoulder surgery when I was in a sling or after my pneumothorax when I had a chest tube in place. Without physical or visual evidence of pain or suffering, many people cannot understand or react with that same empathy and compassion. This is one of the most difficult aspects of this recovery. This can lead to the destruction of self-advocacy, among many other things.
One of the most important things I’ve learned is that communication is often the most important part of self-advocacy. Many TBI patients, such as myself, had felt like they had lost their voice in the process. This stems from misunderstanding, judgment, misperceptions and dismissal.
I was at an appointment last year at the concussion “specialist,” and was explaining to the doctor the many things wrong with the procedure and management of TBI recovery at the concussion center. The doctor’s response to me was, “Keep speaking up. You need to be an advocate for the other patients here.” I didn’t think too much of it in the moment but then it hit me later. While I do want to be an advocate for other patients suffering similarly, isn’t that the doctor’s job to advocate for his or her patient?
This process and any chronic disease process is exhausting, painful and draining. The experiences I endured with many providers in this three-and-a-half-year stretch of time did leave me feeling helpless, hopeless and like I was alone, fending for myself. You begin to go into self-preservation mode and lose your ability to fight for what you deserve, for what is right, for proper care. You essentially lose your voice because at times it feels like no one is truly hearing you.
Thankfully, I have knowledge in the medical field. This may not be the case for many patients who have sustained TBI. I’ve had conversations with close friends about how this has helped me tremendously throughout my recovery. It has led me to opportunities for treatment, to question and research what else is out there for me rather than accepting what was given to me and accepting there was nothing else for me out there to try. This is an edge I have had that unfortunately, many do not. If you or your loved one have been told there’s nothing else to try, there is always something and someone else to see.
Communication is absolutely essential during TBI recovery. There had been times where I neglected my own needs to keep plans I made with family and friends. And there were times I pushed myself too far just to “fit in” with humans as I felt like I had lost my humanness at the impact of injury which led to major setbacks. There was guilt in that. Questions come into your mind of how you will be perceived if you speak up about how a simple task is strenuous and difficult for you or that it wrecked you for a week straight. The bottom line is, most would have understood if I were honest about why I couldn’t keep those plans or make them. I say most because there are still many who do not understand, even those close to you who you explain your experience to repeatedly.
This has unfortunately happened during my recovery and seems to be quite common for many others. It seems to hurt more when those who don’t understand are close to you. This requires energy that TBI patients don’t have left in their reserves to persistently attempt to describe and explain the experience over and over again to be met with skepticism. You start to question how others perceive you and it produces stress, anxiety and the feeling again like maybe it really isn’t worth it to speak up. It adds to the feeling of isolation. At the end of the day, communication is always worth it, though not easy. When you feel like you have lost your voice, that is when you lean on someone close to you who does understand and lifts you up.
If you are a loved one of a TBI sufferer, there are many ways in which you can help advocate for them. It can be as simple as offering a ride to an appointment, to cook a meal, to go into an appointment with them, stepping up for them when they are too reluctant or anxious to speak up. I have learned many important lessons on advocacy throughout this grueling recovery, and much I am still learning and working on. I am still trying to gain my voice back and it is uncomfortable! I deeply hope this will be helpful for TBI sufferers and will offer more understanding for those caring for them.
1. Self-advocacy is putting your health first. This involves saying no. Turning down plans or opting out of events is not selfish and something many TBI sufferers feel guilty or bad about. And trust me, if you are upset they are backing out, they are more likely than not to be more upset than you because there is such a deep desire to get back to some sort of normalcy.
2. You can gain knowledge for your loved one suffering from TBI by listening to podcasts, reading articles or books, reaching out to others for treatment leads. Showing them you want to understand better may be the most supportive and meaningful thing you can do. My most helpful treatments thus far have all been found on my own through research and podcasts except for one suggested by family.
3. Have someone go to appointments with you and have them take notes. You could also ask the doctor if it’s okay if you record the visit. Memory and attention is often affected and the patient may not remember a lot of what was said in the appointment leading to confusion, stress and anxiety later.
4. Write down questions before appointments and take them with you. Something that has been helpful for me is making a list of questions and concerns in my notepad that need to be addressed.
5. Always ask questions at appointments. How might this new treatment affect me? What are the side effects? How could this help me? Could this result in a setback? Many people may be willing to go head first into a treatment out of desperation only to experience worsening symptoms or a huge setback. This happened to me numerous times. Pause and research before proceeding with a new intervention. This may be difficult to do for a TBI sufferer which leads to the next point.
6. Have someone at appointments to speak up and advocate for you. Seeing many dismissive providers led me to lose my voice. I stopped speaking up for myself at appointments. This is a common experience for TBI sufferers. If this becomes difficult for you, ask someone to come to the appointment who feels confident they can advocate and speak up for you.
7. I presented many different treatment options which my concussion specialist either shut down immediately or wasn’t willing to listen to. This close-minded reaction deferred me from pursuing them. When I finally did pursue them on my own, they helped me. If you found a potential intervention and have a good feeling about it, go after it.
8. It is your right to decline treatments that you do not feel comfortable with. This does not mean you do not want to get better. I have unfortunately experienced many providers who viewed me this way when I decided to start declining the 20+ different pharmaceutical medications attempted that worsened my symptoms and wrecked my system further.
9. Ask for help planning and organizing medical bills and other expenses. It may come to a point where managing finances is too stressful for you to handle on your own. Asking someone to take over can reduce this one stressful burden of the recovery.
10. Many TBI patients have limited driving ability or are unable to drive. Offering rides can ease some of the stress burden for the TBI sufferer. A big thank you from the bottom of my heart to all of my drivers – you know who you are!
11. If attending a TBI support group, offer to go with your loved one for support in the process. I found that having someone with me at a support group was comforting and helpful.
12. Self-advocacy means being kind to yourself. This looks like slowing down, speaking up and listening to what your body needs. I started competing with myself in order to get better faster only to lead to setbacks and the prolongation of my recovery. This is a common experience I have learned from others I have connected with. Being kind to myself is a lesson that I have learned and re-learned throughout this recovery and is of critical importance to healing.