Navigating the Schizophrenia Treatment Journey and Planning Ahead for Challenging Times
For adults living with schizophrenia, daily tasks and managing their symptoms each day can be challenging and overwhelming at times. However, having a strong support system and treatment plan in place can help to ease these concerns and make sure individuals stay on track with their treatment plan. One part of feeling prepared may include having a plan in place that can help adults with schizophrenia feel empowered during times when life might otherwise feel out of control.
We sat down with Bethany and Tanara, 2 adults who have experience with schizophrenia, to discuss how they found a treatment plan that works for each of them and prepare for life’s unexpected changes.
Why do you think it is important to share your experience with others?
Bethany: It is vital to advocate for mental health, especially schizophrenia. We [people living with schizophrenia] are often thought of as dangerous and erratic. Through the work of my nonprofit, the CURESZ Foundation, I have met so many unique and talented adults who are thriving despite a schizophrenia diagnosis.
We need more community leaders to stand up and share their experiences living with
schizophrenia to educate the general public and break down stigma. There should be no shame in having a chronic brain disorder like schizophrenia. It is treatable.
Tanara: I believe there are people who are put into positions to help others and that’s what I try to do. When I was diagnosed with schizophrenia around 2011, it was stressful because I didn’t know what was going on. I was lucky enough to have a strong support system consisting of my family and a healthcare provider (HCP) who made sure that I got the help I needed. However, others may not be in the same position as me and have no one to turn to.
That’s why I decided to become a recovery coach and a peer support specialist – to help those living with schizophrenia who may not have a strong support system. Living with serious mental illness can be scary, but I try to see the positivity and take it one day at a time, striving to be the best person I can be. The most important thing to remember is that it’s your life, and you need to take control of it as much as you can and make the best of each situation.
Can you tell us a bit about your treatment journey? How did you go about finding the right treatment plan for you?
Bethany: When I was first diagnosed with schizophrenia in 2007, it was hard to get my symptoms under control. I tried 5 different medications over the next 12 months with very little success. That first year living with schizophrenia was the most difficult year of my life, but together with my doctor, I found a medication that better controlled my symptoms. Within 6 months of this change in my treatment, my parents, my doctor and I were talking about my return to college, and I realized that on the right medication for me, work or school might be possible again. I was able to finish my degree and graduate in 2011.
This has been possible because I have committed to following my treatment plan, consisting of medication and supportive therapies. I realize what is at stake, so I make sure that I stay on track.
Tanara: When I first started experiencing symptoms, I was not being completely honest with my healthcare provider about what I was experiencing, because I didn’t have any prior knowledge about mental illness, medications, or the resources available. Because of this, I was prescribed a few different medications and still didn’t feel like myself. After I learned more, my doctor and I discussed a new treatment option – a once-monthly injection. With the right treatment plan in place, my symptoms were better controlled and I was able to work, spend more time with family and friends, and return to the things that I love.
What I found through my treatment journey is that what works for someone else might not work for you. You have to figure out what works best for you.
You also need to talk to your HCP and your support network and be open about what you are experiencing so they can understand you! It can be frustrating to tell your story over and over, but it only helps you in the long run. Your HCPs and treatment team specialize in helping individuals like us and can make a difference in your life, but they can’t help you if they don’t understand what you are going through.
Managing your schizophrenia symptoms can be challenging, especially during times of stress or change in your life. Creating a plan during times of wellness can help you and your loved ones take action in a crisis. What plan do you have in place to prepare for challenging times?
Bethany: During challenging times, it can be easy to isolate yourself when you need friends and family the most. However, having a strong support network is essential for maintaining good mental health and having support during challenging times.
I speak with my parents every day, see them in person once a week, and I connect regularly with friends. I know that if I do ever experience an episode, they will be there to support me and bring me through it.
With the right medication, I have enjoyed 12 years maintaining good mental health, and I hope that continues for the rest of my life.
My hope is that I will never experience an episode again, but if I do, my plan is to immediately call my doctor to discuss my treatment options and care. Having a doctor who is available and can be a resource to me during difficult circumstances is absolutely important, and I am grateful that I can call my current doctor if I ever do experience signs of a schizophrenia episode. The personal preparedness plan on OnceMonthlyDifference.com includes a contact sheet that you can complete with your loved ones in order to outline who should be contacted if your routine changes or symptoms worsen.
Tanara: For me, the most important thing is my life – I have to take control of it, to have plans in place, and seek help when needed. You can’t take anything for granted. Sometimes things stop working or you’re hit with a tragedy so you need to have a support plan in place.
I have a plan for challenging times, which includes my grandparents, my significant other, and my coworkers. They understand how I would act if I was experiencing breakthrough symptoms or a relapse, and we have developed a plan about what I would like them to do if this occurs, which includes talking to my doctor, exploring hospitalization, and other treatment options. I’ve reviewed and discussed this plan with my support team so they know how I would want to handle a situation. With this plan in place, I feel like I am in control and being heard.
It’s important for me to have a plan in place so that I can keep prospering and growing.
What would you tell others who may be considering a change in their treatment plan, such as switching to a daily oral medication or a once-monthly injectable?
Tanara: My advice is to be honest with yourself. Like I said, everything doesn’t work for everybody, but exploring all options with your HCP and support network is always worth a shot and can be very rewarding. For me, trying a new medication that I didn’t need to take every day made me feel more in control.
Bethany: It’s important to educate yourself about the available treatment options, including their benefits and side effects. When I was exploring potential treatment options, I conducted my own research, and I read memoirs from others living with schizophrenia that convinced me that I could accomplish my goals and get back to things I enjoy with the right treatment plan.
My advice would be to never give up and don’t be afraid to explore new medications or treatment plans with your doctor. If your medication is not working very well, there are other options. Talk to your doctor about what you are looking for in your treatment plan and how you can work together to find it.
If you or a loved one are an adult living with schizophrenia, ask your doctor if a change in treatment plan could make the difference for you. Learn more and download and complete a personal preparedness plan to prepare for challenging times at www.oncemonthlydifference.com.
Every story is unique. If you are an adult living with schizophrenia, talk to your doctor to figure out a treatment plan that’s right for you.
Bethany has partnered with Janssen Pharmaceuticals, Inc., to share her story. She has been paid an honorarium for her time.
Tanara is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring. She has been paid an honorarium for her time.