“The single most important barrier to overcome in the community is the stigma and associated discrimination towards persons suffering from mental and behavioral disorders.” – The World Health Organization
Stigma is a mark of disgrace that sets a person apart from others. When a person is labelled by their illness they are no longer seen as an individual but as part of a stereotyped group. Negative attitudes and beliefs toward this group create prejudice which leads to negative actions and discrimination. – Government of Western Australia Department of Health
Stigma is such a multifaceted beast, whether being tied to dementia, cancer, mental health, AIDS or any “condition” a person may face. As if the condition itself isn’t bad enough, the misinformation superhighway pushes out so much falsehood that one has a hard time tweezing out a few solid grains of truth among the intentional and unintentional stigma harvest when trying to get help online. Unfortunately many use the internet with minimal discernment and help spread the stigma by word-of-mouth. The result seems to be siloing and an us-versus-them mentality.
Few conditions see the harmful results of stigma like two organizations I hold near and dear: Dementia and Mental Health. These two organizations fight much of the same battles yet distance themselves from each other. Here are just a few similarities between them:
- Both occur primarily in the brain although the whole person is harmed
- Both can have a genetic component
- Both have multiple causes in most cases
- Both experience resistance from the patient in diagnosis and treatment
- Both have physical, mental and emotional components
- Both can involve depression, erratic behavior and confusion that are typically out of the control of the one suffering.
- Treatment of symptoms for both can be frustrating and have mixed results
- Nearly everyone you know has a friend or family member who experience one or the other condition, and many of these are not diagnosed
- Both are a spectrum…an umbrella of related conditions
- People die as a result of both.
- Families can be devastated by both.
- Neither are contagious…not even a little bit.
Allow me to start this discussion on stigma by saying, wholeheartedly, I get it. I do. Both of these conditions are mysterious. Both seem sometimes to appear from nowhere, making you worry that they are somehow contagious. Both are sometimes extremely hard to look at and deal with. Both can even have trouble raising money because the poster children aren’t cute puppies or typically even innocent children. In some cases in both camps, the victim’s condition may have been worsened by life decisions that one could throw stones at from a safe distance.
Stop with the stigma. Stop. Now. I am not your dad nor your boss…nevertheless I say a wholehearted “Cut it out”. Why? Because it hurts vulnerable people.
Just one example: One of the hardest facets of care giving is taking away freedoms. Stigma makes this much worse. Taking car keys away from an unsafe senior driver can be very hard. Pride, the desire for independence and the desire to not be a burden make this a crucial life decision for our older seniors. In some cases, though, they know it is time. Maybe a small wreck or a misplaced car are writing on the wall, even to them, that their driving days are numbered. As if it isn’t bad enough to lose the right to drive, being teased (!) by peers is much worse. My mom has had a very hard time for the last several years with people chuckling under their breath when she would repeat a sentence or forget a name or fact. They would correct her and smirk. Amazingly enough, many of these stigmatizers are in the same age cohort mom is in and may yet face the same condition she faces. You know what they say about glass houses…
There are many reasons why stigmatizing these two related spectra of conditions needs to stop:
- Arguably the most important reason (aside from the obvious…that it is a horrible things to do to a fellow human) is it leads to hiding symptoms. Mom successfully hid most of her symptoms for years after her diagnosis if a mild type of dementia. Even we would comment about her repeating the same stories, but we didn’t think a lot of it unfortunately. The stigma of her having Alzheimer’s caused us to be in denial, like somehow hiding under the sheet would make the monster go away!
- Stigma leads to many avoiding a diagnosis. Nobody wants to be shoehorned into a community that they fear. Few want to address their own frailty. Therefore, to avoid the stigmatic results, they don’t talk to a doctor at all.
- Stigma leads to delayed treatment. In dementia, this is huge. The only approved class of medicines for slowing the spread of the disease requires that you begin taking it early. In mental illness and in dementia, an early diagnosis is also critical to care and to building a support structure.
- Delayed treatment increases risks of self-harm (intentional or otherwise).
- Watch your words. A condition shouldn’t take over the patient’s identity. We call a person struggling with a diabetic for some reason, but we don’t call a man with heart disease a “cardiac” or perhaps “Bad Heart Guy”. How about we divorce the condition from the identity. 🙂
- Stigma leads to fear of baseline tests, clinical trials and other diagnostic tools that may help future generations too.
- Stigma, in mental health especially since onset is typically younger, can lead to discrimination.
- Stigma can lead to knee-jerk legislation or reduced funding
- Stigma can lead to isolation, which can lead to worsened conditions.
- Fight stigma in social and traditional media. I will be on the radio later this week discussing this topic.
How can you help end stigma and “be the change” in the dementia/mental health arenas as well as others?
- Learn about the brain and the things that can affect normal brain function. The more you know, the less influenced my myths and bad information. Seek out NAMI and join in in their advocacy/learning events. Visit your Area Agency on Aging or your Alzheimer’s Association office to learn about dementia.
- Don’t assume groups and symptoms are the same, even within the same diagnosis.
- Think in terms of people, not diseases. See the person behind the condition and don’t let the condition define your feelings toward them.
- Be a friend. Visit those suffering. Allow them to vent. Hug them. Be there. Be a positive force in someone’s life who struggles. The world is full of the negative. That part is covered.
- Encourage those suffering to get treatment and ignore stigma. In mental health circles, only around 10% get help.
- Correct misinformation, lovingly, where you can.
- Don’t accept jokes about these conditions. Illness is not funny. Instead treat everyone as you would want to be treated.
- Advocate and give. Join your local Alzheimer’s walk or a NAMI event. Donate.