What I Know Now that I Wish I’d Known Then
Recently I was asked to write an introductory letter to parents whose child had recently been diagnosed or who was going into treatment for the first time. Sort of a ‘what I know now that I wish I’d known then’ article. I thought it might be helpful to use that as a foundation for this month’s blog. My hope has always been that some of what our family experienced can be used to help other families so that their journey might not be so long and difficult.
When my daughter was first diagnosed with bipolar disorder at age 9, I felt a wave of different emotions. First there was relief – after years of troubling behaviors we finally had a diagnosis, our concerns were validated and it wasn’t about being an inadequate parent. Then came fear – what did this mean for my child? What would her future be like? I imagined her isolated, shunned by her peers, unable to function. With fear came sadness – I mourned the loss of what I had dreamed of for my daughter. My heart broke for the suffering she had already endured and what was to come.
I’d be lying if I left out anger – this emotion has come back more times than I’d like to admit, particularly when stability seems so far out of our reach. Why my child? Why our family? What did we do to deserve this? I try to remember that just about everyone has something, at some point, which they have to face and fight. I focus on the many, many silver linings that we’ve encountered along the way. The joy of appreciating rather than taking for granted the most simple of successes or just a peaceful day. I get to experience a level of happiness and gratitude with amazing frequency that others may rarely encounter. Yes, I also get to experience some incredibly painful emotions but those have taught me patience, perspective, resilience, and hope. And I have made lifelong friendships with some wonderful, compassionate, and insightful people who I never would have met were it not for our shared journey.
Looking back over the past 14 years, here are the things that helped me along the way. If you are just starting on the path towards wellness for your child you may feel overwhelmed. Please know that you are not alone nor do you need to be alone.
1. Learn all that you can.
Knowledge is power. Fear is often rooted in what we don’t understand or don’t know. By learning about our child’s illness we can dispel myths, learn about symptoms, treatment options, resources, and strategies. We can replace fear with hope. Often our role is going to be as an advocate for our child because they cannot do so themselves. Document everything you can – medication changes, sleep cycles, mood swings, meltdowns, diet, school attendance or avoidance . . . This valuable information shows trends and important information that, when shared with your child’s treatment team, will help them to get a full picture of the illness. That in turn will lead to more accurate diagnosis and treatment.
2. Get second and third opinions.
Mental illness research is still in its infancy compared to other major illnesses such as cancer or diabetes. The good news is that every year brings new discoveries, particularly in the area of child and adolescent mental illness. The bad news is that not every clinician is up to speed on the latest research in every area. This is true across the board, not just for mental illness, and isn’t necessarily a negative reflection on the clinician. But if you’re not comfortable with one clinician’s diagnosis, approach, or treatment recommendation then get a second opinion. It’s like putting together the pieces of a puzzle. Gradually certain pieces will bubble to the top and fall into place.
3. Take care of yourself.
We are dealing with (in most cases) a chronic illness that will have periods of remission and periods of relapse. Mental illness is complex, our children are growing and developing, changing at a very rapid pace. So treatments that worked at one point may not at another. And, treatments that were unsuccessful at one age may be very successful a year or two later. Over and over we were told ‘this is a marathon, not a sprint’ so pace yourself. We are told on airplanes to put on our own oxygen masks before helping our child. The same holds true here – if we are run down, depleted, and spent, we cannot adequately help our child. Self-care is not indulgent, it’s a matter of survival.
4. Take care of your relationships.
Just as our children save their worst behavior for us, we too may let off our frustrations, stress, and emotions on the ones closest to us. We do this because we know that the people closest to us love us, keep us safe, and will stick by us no matter what. Our child’s illness and development stages limit their ability to understand the impact of their behaviors or they may lack the skills or words to describe what they are feeling. While our children may only be able to react, we as adults have the ability to respond. It’s not always easy, but recognizing the difference between these two words can go a long way towards protecting our relationships.
Just as our children save their worst behavior for us, we too may let off our frustrations, stress and emotions on the ones closest to us. We do this because we know that the people closest to us love us, keep us safe, and will stick by us no matter what. Our child’s illness and development stages limit their ability to understand the impact of their behaviors or they may lack the skills or words to describe what they are feeling. While our children may only be able to react, we as adults have the ability to respond. It’s not always easy, but recognizing the difference between these two words can go a long way towards protecting our relationships.
Reacting is instinctive, impulsive, and emotion based. It’s that ‘zero to 60 mph’ in a Nano second explosion that we see from our child, often with little or no warning. It’s been described as an emotional seizure, once it’s underway we just have to let it run its course and try to minimize the damage.
Responding is all about putting on the brakes when our emotions start to kick into high gear. It involves thinking through the impact of our emotional response and considering other options. 9 times out of 10, I’ve found that slowing myself down and responding instead of reacting gets us to a positive outcome and helps to neutralize a potentially volatile situation.
5. Build a support network and treatment team.
The first time my daughter was hospitalized, I told no one. Every negative, stigmatizing, stereotypical scenario came to mind and I thought that she / we would be judged at worst or misunderstood at best. Unlike most other medical crises where friends would come running with casseroles and car pool rides, our family struggled in silence. By the third or fourth hospitalization, I had completely changed my approach and (thankfully) had become much more open about the realities of this chronic illness. My worst fears weren’t realized, my friends and neighbors rallied and their help was invaluable.
Everyone has their own comfort level in terms of disclosure and you know best what is right for you. However, anything you can do to bring even a few trusted people into your inner circle will go a long way in supporting you through the tough times. Remember, most people want to be helpful and if we don’t let them in, we’re denying them the opportunity, the joy, and satisfaction that comes from doing a good deed for a friend.
6. Everything is a phase.
So many times I wished that I had a crystal ball with a window to the future. The hardest part was not knowing just how long a phase would last or when a medication might finally start to work. With each passing day the anxiety of being stuck grew larger. In hindsight, however, I can say with a great deal of certainty that things will change, and, more often than not, things will get better. The best I could do was repeat to myself ‘this is a phase, this too shall pass’ and ‘it’s not my child, it’s the illness’. I had to look at each day as a new day, a fresh start. When I perseverated about the past I missed out on the signs of hope or the opportunities for progress.
Today I can honestly say that there is hope. Things do get better. Even a few years ago I would not have dared to dream of the success that my children are achieving. Whether it’s in spite of or because of their illnesses, what matters is that their illness hasn’t defined them. I wish the same for you and your family.