A mental illness diagnosis can be confusing, devastating, relieving and even a combination of all three. If your child has just been diagnosed with a mental illness, you might be wondering, what next?
The Mighty asked a few parents who have children with mental illness to offer insight into their journeys so far. Whether you’re new to the game or just need a reminder, this advice might help you take those next steps after a diagnosis. Or at the very least remind you you’re not alone.
“When she was finally diagnosed with schizoaffective disorder you would have thought I would be devastated. Instead, I was relieved and validated. Naming it was helpful to me. It was no longer a ‘what if’ or a ‘it might be.’ It allowed us to move forward.” — Erin Loraine
“This disability doesn’t define who this wonderful young man is. The diagnosis however, finally gave me a breath of fresh air. Now he might be able to finally get the help he so much deserved.” — Lisa Selim
2. Don’t be afraid to ask questions.
It’s unlikely you’re formally trained in psychology and psychiatry. That’s OK. Make it your mission to learn as much as you can about your child’s diagnosis. This knowledge will be ammunition as you move forward, paving the best possible road for you child. If there’s something you don’t understand, ask. Google. Mental illnesses can be complicated, so learn as much as you can.
What parents said:
“At first you might not even know what questions to ask. That’s OK. The more you know about your child’s condition, the more prepared you’ll be to help them every step of the way.” — Cate Luther
“Understanding my daughter’s mental illness was vital to us advocating for her. I wanted to not only understand the medical aspect of her illness, but I also wanted to know what people with schizoaffective disorder lived like. I read every book and memoir in my library about mental illness. It was so important for me to be educated, not only when dealing with professionals but also when dealing with family and friends. I had to educate myself to break through my own stigma before I could help other people understand her.” -Erin Loraine
“It was very important for me to learn the ins and outs of what my child has and continues to go through. It helped me understand how to help him and advocate for what he wants and needs.” — Lisa Selim
3. Help your child learn about their condition.
While it can be scary to witness someone dealing with a mental illness, put yourself in your child’s shoes. Depending on how old they are, it could be hard for them to comprehend what’s happening. But no matter what age, the more they understand the more they’ll be able to communicate what’s going on in their heads.
What parents said:
“We’ve explained [to our daughter] how each medication she takes helps her. Now she also knows their names. We didn’t want her to question why she was taking medication. The more that she knows about her challenges, the more that she can self-advocate.” — Cate Luther
“My daughter is 10 and also has an intellectual disability, so we help her understand her illness at her level. The number one reason we want her to understand her illness is that we want her to be able to advocate for herself. She knows she takes medicine to help her brain and can even tell you what she takes.” — Erin Loraine
“Informing my son about his disability has been important because I knew one day he would turn 18 and I would no longer play such a vital role in his life. I had to help him understand how his disability affects him, that he has a voice in his care and that he’s capable of doing anything he wants despite of it. — Lisa Selim
4. Get ready to learn a new language.
For some, a mental illness diagnosis is a one-way ticket into the mental health system. Welcome! Care is disjointed, there aren’t enough mental-health providers and insurance coverage still has holes. To thrive here, it’ll be helpful to learn how to talk the talk. Just like you need to know the ins and outs of your child’s diagnosis, understanding the system that will provide him or her treatment will be just as beneficial.
What parents said:
“I’ve learned ‘dx’ equals diagnosis, ‘tdoc’ means therapist/counselor ‘pdoc’ is psychiatrist, ‘FBA’ stands for Functional Behavior Assessment… and the list goes on. It’s a whole new alphabet soup. The more you use the terms, the more you’ll learn them.” — Cate Luther
“The reality is that to work through our incredibly challenging mental health system we have to practically get our honorary PHD in psychiatry! Get connected with a chapter of the National Alliance on Mental Health (NAMI) in your area, meet other parents and read, read, read!” — Erin Loraine
“It’s important to attend any trainings, go to support groups and research any language professionals throw at you. The more involved you get in the complex systems that serve your children, the more information you’ll gain. The mental health system is complex and ever-changing.” — Lisa Selim
5. Connect with other parents.
Raising a child with a mental illness may seem isolating, but it doesn’t have to be. Connect with parents and use each other as resources — share the triumphs, the missteps, and give each other support. There’s a community out there, you just have to find it.
What parents said:
“When we suspected that my daughter had a mood disorder, I joined The Balanced Mind Parent Network. It’s an online support group. When no one else understood what we were going through, this group got it. I’m still a member today, only I’m the one offering support to other parents.” — Cate Luther
“No one understands like other parents. No one. I found my support through online support groups and through NAMI. I’ve made some great friends through this journey. I wouldn’t have made it this far without knowing some of those brave parents who’ve shared my joy and pain with me and understood every single bit of it.” — Erin Loraine
“Other families who’ve been though similar situations can provide empathy, not sympathy. Not once in this journey have I wanted sympathy. I’m glad I had support and people who would offer constructive advice and sometimes even criticism. This meant a lot since so often we’re shut in our house.” — Lisa Selim
6. Be prepared to advocate for your child.
In the journey to get your son or daughter treatment, there are times you’ll have to fight to get your child the care he or she deserves.
What parents said:
“We’ve had to fight for every single thing we’ve gotten for our daughter, even with an amazing team of professionals on our side. Some of the things we’ve been through are exhausting emotionally and physically. Getting help for your child is a uphill battle. You have to stay strong, take care of yourself and be ready to move mountains. If you don’t stand up nothing will ever change for your child or for anyone else.” — Erin Loraine
“My pastor gave me the best advice. He said, ‘He is your son and no one knows him or loves him like you do. In the system he is just a number. That is why you must speak up.’ And then don’t feel guilty for doing so!” — Deborah Geesling
“So often I’ve had to put the tears away until after a meeting and advocate for my son’s needs. It’s about what’s best for him. He is human and is worth every bit of time and energy. He will never stop learning and growing; therefore, it’s important to make sure all his needs are met until he’s capable of doing it on his own.” — Lisa Selim
7. Accept the changes.
There might not be such a clear cut “before” and “after,” but like with any diagnosis, there will be changes. Changes in family dynamic, changes in your expectations and changes in your child’s path. Embrace your children for who they are now, and get them the care they need so you can all move forward.
What parents said:
“Your life may look different than the life you imagined, but you will make it through. Our family therapist helped my husband and I go through a grieving process. It helped us immensely.” — Cate Luther
“My child is literally a different person than she was before her illness. It’s absolutely heartbreaking. We’ve had to learn our daughter is not her illness. She is our child who happens to have a mental illness. Separating the two was very helpful.” — Erin Loraine
“I had to finally accept I don’t care what my son does, as long as he has good morals and values. Once I stopped blaming mysef and made time to take care of me, it was much easier to understand that nothing can change him, and I wouldn’t want it any other way. He has actually taught me more than I will ever teach him.” — Lisa Selim
8. Don’t forget to take care of yourself.
If your child has diagnosed with a mental illness, here are more resources that might help:
-Take NAMI’s Family-to-Family class, a free, 12-session educational program for family, significant others and friends of people living with mental illness.
-Connect with other families on NAMI’s Facebook page.
-Join the Depression and Bipolar Support Alliance‘s The Balanced Mind Parent Network.
-Find a support group through Mental Health America.
-Take time to do something that makes you happy at least once a week. Yes, you’re caring for someone else, but you have needs too.
Everyone’s experience with mental illness is different. These tips are meant to offer insight but cannot replace talking to a medical professional about what’s right for you and your family.
*Quotes have been edited for length and clarity.
“When we finally received the official diagnosis of bipolar disorder my husband and I actually felt a sense of relief. It meant we could use this information to help our daughter get more help at school.” — Cate Luther