Stigma |stig•ma| noun :a set of negative and often unfair beliefs that a society or group of people have about something; a mark of shame or discredit; (archaic: a scar left by a hot iron: a brand.)
Invalidation. | in•val•i•da•ion | noun :to discredit; emotional invalidation is when a person’s thoughts and feelings are rejected, ignored, or judged; it disrupts relationships and creates emotional distance.
Alienation. | ālyəˈnāSH(ə)n | noun :the state or experience of being isolated from a group or an activity to which one should belong, desires to belong or in which one should be involved.
Misunderstanding. |mis•un•der•stand•ing| noun :a failure to understand something correctly
I’m writing today from my bed.
I’m writing this post for myself but I’m publishing it for those who find themselves in a similar place.
We don’t have the flu.
We haven’t broken a leg.
And we’re not recovering from surgery or a chemo treatment.
None the less, we are in legitimate pain. And we suffer.
We have varying degrees of mental illness.
We’re not crazies, psychos, nut jobs, whackos, Looney Tunes or straight jacket models.
We are more than the slang that labels us. Much more.
We’re not pretending, manipulating or lying. We’re suffering.
It has been almost three weeks since I have been able to leave my house. I’ve cycled through all my pajamas and visited the shower less than I’m willing to admit.
To be clear, I don’t choose this and neither does anyone else whose lives are abducted by imbalance brain chemistry. We have no more control over our illness than a cancer patient has over theirs.
Like other sufferers, sometimes I hide. Other times I just need to shout from the hole:
I’m really, really scared. I feel desperately alone in here and I’m in excruciating pain and I wish that it mattered to those who are afraid of me, who keep me at arms length–who don’t understand.
Most of the time I can rise to the occasion and do regular life–enjoy it even. I smile, entertain, and care. Sometimes it’s a mask. The price of pretending is less costly than the price of alienation or abandonment, judgment or rejection. But other times it is genuine–hopefully nobody knows the difference.
People with illnesses like bipolar, major depression, complex post traumatic stress disorder, obsessive compulsive disorder, borderline personality disorder are said to have invisible disabilities. They often feel and experience emotions much more intensely than neurotypical people. We also experience tremendous social stigma and too often our disabilities shadow our beautiful abilities.
Tears, Talking & Time
It turns out that one of the things that most helps people dealing with mental illness is to be invited to talk and be given the gift of attentive listening and empathy.
On the other hand, the most emotionally dystregulating and hurtful experiences for us is when our vulnerability is met with dismissal, invalidation or criticism. Being misunderstood magnifies the battle.
My husband is amazingly supportive; he’s taken the initiative to learn, given time to listen and exercised loving patience. He’s virtually my only support. I tell him regularly that he is God with skin on but I worry my illness will wear him out–that his love for me will slip into resentment and detachment.
Today is his birthday but I’m unable to throw the family party I had planned. Someone else is doing my gift shopping. I hope to shower, fix my hair and put on makeup before he gets home from work–after he stops at the pharmacy, the grocery store and picks up take out. You have no idea how strong my feelings of shame and self-loathing actually are.
My doctor added another medication and I can barely keep my eyes open. The side effects will pass, he says.
This week my husband and I have spent our evenings researching, reading, crying, praying–and holding each other.
Research statistics reveal 26.2% of Americans 18 and older suffer from some form of diagnosable mental illness. That’s a staggering 57.7 million (based on the 2004 census–how much higher it is now), which means 1 out of every 4 people you know could have mental illness.
……. 1 out of 4 …….
The following letter echoes some general sentiments of those suffering with mental illness.
Dear Family Member, Friend or Church Leader,
When our invisible disability takes us out of commission or away from our commitments, please don’t assume we’re undependable–our illness is unpredictable.
When depression sucks joy from our lives, please don’t refer to us as Debby Downer or Bob Bummer. Please don’t tell me to put on a garment of praise for the spirit of heaviness or that I’m just under spiritual attack.
When anxiety cripples us and it is all we can do to keep our breathing regulated, it doesn’t help when you tell us to chill out or quote the Psalms.
It isn’t helpful when you tell us to just think positively. Contrary to popular belief, for us happiness is NOT a choice.
We know you sincerely mean well. You may believe we actually have a choice in whether or not to experience our illness. What you may not understand is that to us this feels like judgment, coercion and invalidation. It pours salt in our wounds.
It hurts when those with visible illnesses are offered meals while those with mental disorders are offered avoidance–when we are accused of manipulation, self-pity or attention-seeking.
We with mental illness diagnoses are real people with valid struggles–-we need your patience, understanding, kindness and love.
We feel guilty for the burden our illness places upon those we love. We don’t want to need your support.
We are more than our illness. And when we forget that we are also bright, caring, collaborative, generous, sensitive, creative, and insightful people, we need you to remind us!
Even when it looks like we aren’t trying, we need you to believe we are doing the best we can.
Thank you for trying to understand. We’re not looking to you for a solution–we just need your kindness and validation.
Friends, it was not an easy decision to post this. The ramifications could be brutal but as I have said from the onset of this blog, I write with honest vulnerability and transparency–not for self-focus but for the impact on those who tell me how much my words resonate with them.
My hope is that if you suffer from mental illness, you will gain more courage to come out of hiding. If you know someone who is afflicted that you would have more understanding.
If you have a family member who suffers, consider taking the time to offer the gift of inquiry and attentive listening.