You feel like you have tried everything. You doctor says you are doing all the right things, but you are still experiencing debilitating symptoms with no relief in sight. This can be frustrating and make you feel a sense of hopelessness.
While there is no magic spell that will make you feel better, there are a few options to explore.
Seek a second opinion
It is within your right to seek medical care from a variety of professionals. Some may have different training or more up to date knowledge on brain injury (or brain injury-related medical topics).
Allied health professionals
Allied health professionals are healthcare and health service providers that are not specifically medical-focused Allied health professionals include: dental hygienists; laboratory and medical technicians; optometrists; pharmacists; physio and occupational therapists; psychologists; speech language pathologists and audiologists . They can provide a range of diagnostic, therapeutic, and support services to aid in your treatment and recovery.
Ask your physician about the benefits of other therapy options. Some of these services do not require a physician referral, so be sure to do your homework. Please read the next section on Private Clinics for additional information.
The public health care system can be limited and not cover all treatments and services. You may need to seek the assistance of private providers or clinics. Be mindful that some of these clinics are not regulated in the same way that publicly funded hospitals are, so there is no guarantee the quality of the treatment or whether it will work. In fact, it they state the treatment will absolutely work, that is a sign you should look elsewhere, as this is an extreme claim. Brain injury is so individualized and complex, there is no “one size fits all” treatment for everyone and no guarantee that a treatment will work for you.
Private clinics are not always covered by insurance and you may have to pay out of pocket. This is something to keep in mind
When looking at private clinics, make sure you ask a few important questions:
- Is the treatment evidence-based and could they share the research with you?
- What is the benefit of the treatment related to the cost?
- What is the wait time for treatment?
Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged individuals seek advice and recommendations regarding diagnosis, treatment and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:
- The product or service promises a quick fix
- Sound too good to be true
- Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
- Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
- The results or recommendations of product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
- Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based
Always proceed with caution and with the advice of your medical team.
Seek the support from other people who have been in a similar position as you and have found success with other therapies, treatments or recovery methods. Brain injury associations across Canada offer groups online and in-person for individuals living brain injury. Some are geared towards targeted groups such as women, men, youth. Find your closest brain injury association to see what they have to offer.
We are what we eat, which means that our diet has a big impact on our brain’s health and well-being. Visit the section on nutrition to see how to optimize your diet for brain health.
No matter what stage you are at in your recovery, you need as much restful sleep as possible. Both cognitive and physical fatigue can affect so many aspects of daily living, including mood, memory, concentration, communication, and your general ability to deal with issues or situations.
Take a step back
Take a step back and slow down. Sometimes we need to pause and listen to our bodies. Look at what may be triggering your symptoms. You may be juggling too many things at once. It could be something in your environment, such as the lighting in your home or office. It is important to remember that recovery can take time, so you need to be patient and look at the whole picture.
Do something you enjoy
When you are not feeling well, it is hard to focus on the positives. Do something you enjoy or that brings you happiness and relaxation. Try to build this into every day. Doing activities that make you feel fulfilled can help you in your recovery process.
Become educated on your health
Individuals as much as possible need to become their own health advocates. Becoming as educated as possible on the topics and treatments for brain injury will help you better communicate with your health team and bring new information that might be helpful in recovery.
Here are some helpful tips to help you advocate for your health:
- Write down some talking point or notes so you don’t forget anything and can speak clearly with the healthcare provider
- If you have articles or research papers about brain injury you want to share with your clinician, bring copies to your appointment. Try to limit the resources you bring to three or less
- Ensure your sources of information are reputable, credible and based on evidence.
- University and medical research centres are examples of reputable sources
- Be open to their perspective and knowledge of the topic. Take notes (or have someone take notes for you)
- Ask for more links or resources so you can be more informed
Use your voice
You have a powerful voice as a person with lived experience. You can use this power to advocate in your community. Reach out to your local brain injury association to see how you can share your experience and challenges and contribute to advocacy efforts.