Adults Living With Mental Illness – Family to Family Series – Part 1
Mental illness can be loosely described as any biological brain disorder that interrupts the normal chemistry of the brain and its functions. There is a host of diagnoses such as bipolar, major depression, anxiety, OCD, PTSD, borderline personality disorder, panic attacks, dementia and schizophrenia to name a few. There are several genetic factors in play and certain life stressors can also be triggers. It is an equal opportunity disease with 1 in 17 living with some variation of this disorder, including notable historical figures such as Abe Lincoln, Winston Churchill, Beethoven, Isaac Newton, and more recent well-known names like Buzz Aldrin, Terry Bradshaw, Mike Wallace and Jane Pauley. There has actually been some research conducted on the link between creativity, intelligence and mental illness.
At this point in time, mental disease is not preventable; but thankfully, it is manageable.
In addition, it is worth noting that mental illness is not caused by bad parenting or weak character. These two facts are particularly relevant to me because I have an adult daughter who has suffered from mental illness much of her life. It is her personal struggle, and the impact it has on our relationship, that led me to seek knowledge and information.
NAMI (National Alliance on Mental Illness) was founded in 1979 and is the largest grassroots mental health organization in the country. Their mission is to improve the quality of life and protect the rights of those suffering from this disease and their families. They also provide a platform to share experiences along with a desire to foster independence when at all possible. They teach empathy along with understanding and are very clear there are no magic formulas. I recently started a program through NAMI designed to help family members understand and assist adults living with mental health issues. It is my goal, as I go through the program, to share the principles I discover and my insight through a series of articles.
The first class covered the predictable emotional responses from family members once they discover a loved one has been diagnosed with a mental disorder. It is important to note here that not all family members experience the same responses, and not all at the same time. Everyone has to go through their own process and it is unfair to judge or predict how we think others should react. We are only accountable for our own behavior.
The most obvious first reaction is shock, followed closely by confusion. This crisis happens to other people, not us! It is easy to slip into denial; which is our mind’s way of protecting us while we sort through the process. My daughter was a teenager when her symptoms first surfaced. Of course, I blamed normal teenage angst. She was also a Type 1 diabetic and her insulin levels often accompanied her mood levels. I used every rationale at my disposal to explain away the roller coaster of sad to mad that roared through our house almost daily.
The next step comes as a revolving door of anger, guilt and resentment. We want to blame the victim. I know it sounds bad, but we have to deal with the truth. We want them to try harder; get a grip. It’s not that bad. Life is unfair to everyone. Learn to handle it. Right? That is what we want/expect them to do. Then we feel guilty. I felt guilty. Was it my fault? What had I done wrong? I had obviously failed my daughter in some way for her to be so upset all the time.
With guilt, comes compensation. If it truly is my fault, then I must somehow make up for it. I can change her if I try hard enough. The unfortunate reality is that sheer grit will not cure the mental illness, nor will it magically transform family members into mind healers. Covered under this process is the isolation that many loved ones experience. As a reaction to either the overwhelming emotional toll or the uncertainty of how to talk about the situation, some individuals cut themselves off from friends, other family and healthy outlets in their life and in some ways also fall victim to depression.
This ushers in the moments of mourning. We grieve the loss of the life we envisioned for them. We are saddened when our relationship turns volatile, hostile or is even lost for a while. We are fearful and uncertain for what their future holds and our place in it. A unique component of mental illness is the cycles or episodes involved. My daughter would go through a dark place and emerge on the other side. Things would seem good and I would breathe a sigh of relief and gratitude. The worse was behind us. Then it wasn’t. The spiral would begin again. This creates a term the program refers to as ‘chronic sorrow’; where the grief doesn’t ever completely go away.
What comes after all these other responses is finally acceptance; the calm understanding that this disease is a part of your loved one's life. With hard work and management, it doesn’t have to sideline their dreams and future, but it is an ever-present reality.
It is important to recognize that all these stages are normal. They are not good or bad; they just are. We all have to embrace and work through them at our own pace. It’s also worth noting that a relapse could start the responses over again from square one. It doesn’t seem fair, but if there is one thing I’ve learned over the years, mental disease is never fair.
The last thing covered in the first lesson is the ‘double-edge sword’ that is mental illness. This disease not only takes away behaviors that you were familiar with, and even depended on, but it also adds distressing and confusing behaviors that now need to be addressed. This combination cuts both ways into the relationship you once shared with your loved one and greatly influences the one you will have going forward.
What you may miss – Their ability to focus, handle minor problems, express joy or intimacy. Their thoughtfulness, open-mindedness, enjoyment of life, concern about their appearance.
What you may now notice - They become tense, irritable; have extreme sadness, forgetfulness, hostility. They may exhibit inappropriate behavior, act out sexually, become irrational or indifferent and withdrawn from those who love them.
Any combination of these actions can be highly distressing for both the individual and their loved ones. It can be confusing to know which attitude to tackle first. It is important to understand that your loved one is confused as well. They don’t have the answer to the ‘why’ questions any more than we do and yet they are the ones left to sort out the waves of disorientation and turmoil rushing over them. Most of them have no clue what to do to help themselves and at first, will resent those trying to ride in to save the day. My daughter often resented the ‘answers’ that I had for her problems.
To be honest, I was grasping at straws, but at least I felt like I was doing something. I resented her inertia and refusal to try anything. We often found ourselves at a stand-off. I have learned, through trial and error mostly, how much to say and what advice I should keep to myself. I am pleased that she has recently agreed to a formal regiment of medication.
That brings me to another comment from the first class that really struck home with me.
‘Medication calms the thoughts; therapy changes the thoughts’.
Mental illness care is not like taking an antibiotic to kill a virus. There are many facets (and people) involved in the management of the disease. There is no shame or stigma in reaching out to the professionals for their guidance, wisdom and help. I have also discovered there is no shame in the knowledge that I do not know what I do not know.
It is a bit humbling to realize that I have handled certain aspects of my daughter’s mental illness incorrectly. I say that understanding I did (and still do) the best with what I know. I am certainly thankful for NAMI and this class. In just the first week I learned invaluable information and more importantly it instilled in me the hope that the more I invest in knowledge and loving practice, the better I can help my daughter and the quality of our relationship.
I encourage you stay with me for this journey as we search together for the answers to help our adult family members living with mental illness.
And remember to always..
Hope With Abandon