I was talking to a good friend today, and as I listened to him talk about the challenges with his very young daughter, tones of societal judgements of “mental illness” poured in. I hate the words “mental illness”, with a passion. The stigmas associated with those words are so negative and ill informed. Most people when they hear the words “mental illness” or “mental disorder” think of a deranged lunatic that is likely to become the next highway shooter. There is a certain amount of shame people with a mental illness feel every time they have to utter or hear those words. And as a parent of a child who could be classified as “mentally ill” I die a little inside every time I read those words.
Society, in most cases, has been subjected to stigmas by the media and Hollywood of what mental illness looks like. Mental Illness in the public’s eye looks like a person who is a threat to society and likely a weirdo. Less worthy, sub human, and capable of the worst. Even within the medical field there are stigmas. And then there are the affects of stigmas: devastation, hopelessness, negative thinking, shame, guilt, despair, fear, feeling alone, and narrow-mindedness. The way a Doctor delivers diagnoses is such a pivotal moment for the patient and the patient’s family. Doctors and healthcare workers: stop making parents feel like their child is destined to a life of struggle and hardships, difficulties and barriers, and this diagnosis is a lifelong incarceration sentence. We already feel totally inadequate and see the negative aspects quite clearly! How about instilling a bit of hope into us by sharing positive statistics and success stories of patients who have adapted well? Or painting a larger picture of what taking a well-rounded approach to treatment looks like?
I remember knowing that there was something very different about my 3rd daughter. 4 of my 5 children are ADHD, but all are different. She had a lot of mood and behavioral issues. So I already knew that something was wrong, but I needed to put a name to it so we could get her the help she needed. After years of basically being told I didn’t know how to parent or she would grow out of it, we got a few diagnoses. Bipolar was the first to come. Then ODD, and finally ADHD. Bipolar was eventually ruled out. But I felt so inadequate and depressed because there wasn’t anything positive about how the news was delivered, and the treatment options were medication. For the doctor, this wasn’t life altering; it was just another patient and another diagnosis. While part of me was relieved that my concerns were validated, another part of me was broken that she had these diagnoses. There was no hope at the end of that tunnel.
Then there is the flip side to all of this: teachers, doctors, friends and even family members that think it’s made up. They’re dismissive that there is even an issue when there clearly is and y0u have a diagnosis to back it up. Or the ones that say “Yeah I can be pretty (insert condition in the blank) too, sometimes.” No, you can’t be somewhat adhd, bipolar or ocd “sometimes.” That’s not how it works.
What is Mental Illness/Mental Disorder?
“Mental illness refers to a wide range of mental health conditions — disorders that affect your mood, thinking and behavior. Examples of mental illness include depression, anxiety disorders, schizophrenia, eating disorders and addictive behaviors.” – Mayo Clinic.org
Under the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders) here are a few things that are considered mental health disorders:
- Bipolar Disorder
- Eating Disorders
- Obsessive Compulsive Disorder
- Anxiety Disorders
- Autism Spectrum Disorder
- ODD (Oppositional Defiant Disorder)
- Schizoaffective Disorder
- Hoarding Disorder
- Narcissistic Personality Disorder
- Alcohol/Substance Abuse or Dependence
As you can see from this very small sampling, there is quite a wide range of disorders on this list. Some of these seem better qualified as neurological disorders. When I was diagnosed with anxiety last fall, I was handed a list of mental health professionals in my area that could help me treat my “mental illness” with medication and counseling. I was so offended! I was coming down from a panic attack that was so bad I thought I was dying. I had consumed 3 cups of coffee and eaten a banana that morning and was extremely stressed out over a phone call I had gotten regarding treatment of my 3rd Daughter. I proceeded with my day as usual but was overcome with all of the typical symptoms of a panic attack: racing heart, heart palpitations, racing thoughts, lightheadedness, feelings of blacking out, sweats, nausea, upset stomach, extreme thirst, and an electrical current throughout my body that just wouldn’t stop (adrenaline). I felt like a second class citizen when he handed me those papers. Like it was ‘all in my head.’ Clearly it wasn’t as I had absolutely no control over my body and how it was reacting.
What is a neurological disorder?
“A neurological disorder is any disorder of the body nervous system. Structural, biochemical or electrical abnormalities in the brain, spinal cord or other nerves can result in a range of symptoms.“ -Wikipedia.org
“The brain, spinal cord, and nerves make up the nervous system. Together they control all the workings of the body. When something goes wrong with a part of your nervous system, you can have trouble moving, speaking, swallowing, breathing, or learning. You can also have problems with your memory, senses, or mood.” -http://www.nlm.nih.gov/medlineplus/neurologicdiseases.html
According to the National Institute of Neurological Disorders (NINDS), these are some of the common neurological disorders:
- Autism Spectrum Disorder
- Muscular Dystrophy
- Tourettes Syndrome
- Parkinson’s Disease
As you can see, some conditions overlap in both categories. So what’s the difference? It seems by these definitions that neurological disorders have more to do with the physical structure and function of parts of the brain or nervous system, whereas mental disorders are conditions that affect mood, thinking and behavior. But what is the cause of those conditions that affect mood, thinking and behavior? Can’t that also be a difference in physical structure, damage or biochemical abnormalities in the brain?
I don’t have those answers. But given the information I’ve come across in my research these are thought-provoking questions. Neurological disorders (of the brain) don’t carry the same stigmas that Mental Disorders or Illnesses do, but they still carry stigmas. But why is that? I mean don’t they both essentially stem from some biochemical or physical deficit of the brain, which affects how that person functions on a daily basis? Why is it more acceptable in society to suffer from Alzheimer’s or ADHD than it is to suffer from depression or bipolar disorder? While the symptoms of these disorders are vastly different, the answer is IT ISN’T more acceptable.
People with mental illness and neurological disorders deserve our respect. They didn’t ask for the symptoms that plague them anymore than someone asks for cancer. And in a world of negative and judgmental stigmas, they deserve our empathy and support so they can lead productive positive lives. Doctors and society: your words have power! Show love and empathy instead of condemnation. Instead of focusing on the negative aspects of a possibly lifelong disorder, consider sharing hope for better management of symptoms. Link them with a positive networking group with others sharing their condition. Hope is the one thing that keeps the world moving.
To all of you parents out there reading this, I want to offer that hope you are looking for. It took me months to muster the courage to start blogging about our journey and experiences. Partly because I felt so inadequate, and partly because well- it’s personal! If you have a child that has recently been diagnosed with a mental health or neurological disorder, I want you to know that there IS hope for your child. Do not give up and lose hope. A diagnosis is a starting point and will give you direction. Medication may or may not be a part of your child’s treatment, but it’s only one part. There are several things you can do to support positive outcomes, like:
- Therapy/Counseling when appropriate
- Join a support group for parents to garner new ideas, AND as a bonus…
- Have regular ‘play dates’ with these parents and kids who are like your child (because they GET it!)
- Identify episode triggers for your child
- Implement coping techniques with your child (ask other parents, use behavior modification therapy, google, or just get creative)
- Help your child pick accessible and reasonable therapeutic hobbies (ie: baking, gardening, knitting, dog walking, reading, sketching, crafting)
- Try to identify the ‘gifts’ in their disorder (ie: mechanically inclined, great multitasker, natural born leader, influential, creative thinker, problem solver, good organizer, etc.)
- Set short and long term goals with your child on paper, and acknowledge the positive progress they are making
- If needed, get your child a 504 or an IEP at school
- Get your child involved in a volunteer activity. This will encourage them, raise their self esteem, and often puts things into a new perspective
- Join a forum or research symptom management options (ie: eft tapping, meditation, music, massage, exercise, chiropractic services, supplements, dietary changes, etc.)
You are your child’s best advocate, never forget that!