How to be a Mental Health Advocate
How to be a Mental Health Advocate
By Erin Black and Kara Guerriero
One of the biggest challenges with mental health conditions is the stigma that surrounds them. Having a mental health condition is really no different than having a physical health condition, like cancer or high blood pressure. One in five people will experience a mental health problem in any given year; one in four if you consider substance use disorders.
Caregivers and family members who overcome these stigmas can play an important role in helping a loved one with mental health concerns seek treatment for and manage their condition. If you are ready to step up and step in on behalf of someone you care for, here are steps you can follow to become their best advocate.
TAKE A DEEP BREATH
The road of advocacy is often challenging and rewarding.
LAY THE GROUNDWORK
- Ask your loved one questions about what they want and need. It’s important for people to feel empowered to control their future. Understanding more about them will help you have more tools to help them get the most enjoyment out of their days and hopefully the quickest path to recovery. In the long term, try to get them to put words to paper by putting together an advance medical directive or a psychiatric advance directive.
- Find out who else is in their circle of care or identify who they want in their circle.
- Determine what kind of medications they are taking so that you can assist them with taking or keeping track of them.
- Build a rapport with their doctors/clinicians. Note, this may require some paperwork to be signed to allow them to talk to you.
- When you talk to or visit with your loved one be sure to take notes on how he/she is doing, what the doctors are telling you, and what he/she is telling you. You will often find that there are discrepancies between these sources. For example, our brother has a serious mental illness and often does not get good sleep. The doctor will tell us, “he had a good night,” and when you ask him, he will say, “I didn’t sleep well.” When things like this come up, don’t be afraid to reach out to the medical staff to try to discern what is really going on. You might get pushback, but that’s part of being an advocate.
- Keep the circle of care informed and encourage others to participate. It’s hard to do this on your own. Reach out to other family members and friends who can engage with your loved one. Set up regular calls or communication. One of the hardest things about having a mental illness is the distance and/or disconnection you feel from others, especially if you are hospitalized. You can use a family communication app, like Carely, to keep others connected and in the loop.
- If you feel like the treatments aren’t working, speak up on his/her behalf. It’s not uncommon for there to be resistance from the medical staff to change medications or treatment protocols, but you know your loved one best. Trust your gut. Get a second opinion. Look into using a genetic testing tool like Genomind or GeneSight to find out what the best medications are for a loved one based specifically on his/her genetic makeup. Continue to get feedback on how he/she is feeling and what is and isn’t working. Sometimes medication will work for a little while and become less effective over time.
- Continue to reinforce your loved one’s wishes to doctors. Discuss with them what options are available, what things you should keep doing and/or what new things you should try. Remember that good mental health isn’t just about mental health. Medications are important and may be necessary, but sometimes physical, emotional, and spiritual health issues may exacerbate someone’s mental health concerns. Healing is about the whole person.
- Educate others you come in contact with about mental health. Explain to them that mental health problems are just as common as physical conditions like arthritis (23% of the U.S. population) or diabetes (25% of the U.S. population).
- Continue to encourage your loved one. Help him/her to remember times that were not so difficult. Encourage him/her to pursue something he/she enjoys: play or listen to music, get outside, play cards, do puzzles, go to church. It’s very important to stay engaged in life.
- If your loved one is a person of faith, help them to get to services and/or connect to pastoral staff.
- Get outside! This is important for both you and your loved one. There are many many positive benefits of spending some time outdoors. It will rejuvenate you both.
- Don’t ignore yourself and your own needs. You can’t take care of someone else if you’re exhausted, burned out, or totally depleted physically or emotionally. Ask for help from your own circle of friends or family. It’s okay--necessary even--for you to take a break.
- Connect with mental health support groups like NAMI (National Alliance for Mental Illness). They have groups for clients as well as friends and family members. Getting connected will help reduce the feelings of isolation. It may help your loved one to know that there are many others struggling, too.
Related: Signs of caregiver burnout
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