4 Things to Do When You Feel Discouraged As a PANS ParentJan 26, 2023
You might be saying to yourself, will there ever a time when I won't feel discouraged about PANDAS/PANS parenting?
I understand--I felt that way too.
I felt like the difficulties would never end.
I felt like my child would never heal.
I had to keep hope going even when I didn't have hope. Even when I couldn't imagine that things would get better.
Here are 4 ways that I kept myself going during the darkest times:
- Adjusting my expectations. When I realized that once again, another treatment or doctor did not work, I had to remind myself that I was going to try many things before I found things that worked. I began shifting my expectations to a mindset of learning. I committed myself to learning. More learning, and then learn even more learning! I worked towards accepting that PANDAS/PANS parenting was going to be a much longer journey than I had expected and I would have to try more things than I could have ever imagined to try to help my daughter. I would need to seek out many providers and invest a lot of money. Was this upsetting? Beyond words. It shouldn't happen this way--to anyone! But it was happening to us. And I knew, like a marathon runner, that if I didn't train my mind and my heart, I wasn't going to make this journey. My daughter was depending on me. So I had to practice a DBT skill called Radical Acceptance. I radically accepted that this is how it was going to be and I had to keep putting one foot in front of the other until I found answers. I consistently worked on learning and training my mind and heart. That is what I had control over.
- Self-care. Using the analogy of a marathon runner, I knew I had to build in rest and take care of myself. It wasn't optional. If I didn't invest time and energy into self-care, I would not be strong enough for this PANDAS/PANS journey. It was the last thing I wanted to do because my body urgently wanted to help my daughter ALL the time. I had to go through the motions of self-care anyway--sleep enough, exercise some, talk to friends, find humor is the absolute insanity we were experiencing, and seek support/comfort from people who could and would give it to me. I had to say goodbye (at least temporarily) to people who couldn't be there for me. That part hurt A LOT. I had to keep reminding myself of my WHY. I was doing this because I wanted my daughter to heal.
- Connect with other PANDAS/PANS parents. Feel free to join my facebook group and check out the other ones out there. Reach out to people in the groups. Talk with those who seem to understand you. Keep working at it because it can take a while to find someone you click with. You deserve to be heard and understood.
- Take a step back and look at what HAS improved. If I'm honest with you, I was really angry when people told me to do this. I did it anyway because it was good advice. Do it anyway. It works. Even if only a very small thing improved, and even if you lost the gains (I know that's the most excruciating part!) those gains were there! They will come back. Write them down, tell yourself, "I will get more of these good things and I will not give up until I get there".
A lot of PANDAS/PANS parenting is mental. Find ways to invest in training your mind and learning ways to support yourself and your family. This is a tough journey--beyond words sometimes. And I know you can do it!
If you want more help with navigating this challenging PANDAS/PANS parenting path, consider taking my online course.
I also provide coaching if you want some one-on-one help navigating this path. Email me at [email protected] if you are interested in coaching.
Most importantly, remember--you are not alone.