7 Things People with Mental Health Challenges Need

Photo by Jesse Williams Image description — a black and white photo of several people waiting on a train platform. The person in the center is looking at their phone.

My relationship with medication is ever-changing. I have been on dozens of psychiatric medications in different combinations. I have also spent time in recent years completely off of medication. Currently, I’m on an anti-depressant and an anxiety medication in addition to a host of other non-pharmaceutical ways I work to maintain wellness as best I can. As I grow, my mental health needs change. Medication can be a valuable part of our mental wellness support toolkits — or not — and that is a personal choice that each person must make for themselves.

But when it comes to mental health care, there are things that each of us need, regardless of which mental health tools we use. While this list is far from comprehensive, I hope it can be a springboard for conversation and patient-centered advocacy.

1. Access

Numerous systemic barriers prevent people from accessing proper mental health care. Comprehensive treatment is prohibitively expensive in the US and many other countries: Even those people fortunate enough to have health insurance often need to pay large co-pays and out of pocket expenses for treatment. Exercise classes, nutritious food, creative outlets, acupuncture…many strategies to support mental wellness are not covered by insurance companies and therefore most people cannot consistently access them. Cost is a top barrier to accessing mental health treatment. On top of cost, refugees and immigrants often face language barriers in accessing mental health treatment.

The point at which people try to access mental health treatment is usually a time when they have exhausted their other options and are nearing or enduring a crisis. The bureaucracy and slowness of the mental health system means accessing a good provider is often too overwhelming and time-consuming for people battling mental health challenges on top of their other daily stressors. A recent study in the the Journal of Health and Social Behavior also showed that race and class heavily impact the likelihood that a psychotherapist will return a person’s call for mental health services: “A black, working-class man would have to call 80 therapists. A middle-class white woman would only have to call five.”

Even if someone can manage to connect with a mental health professional, they may need to wait weeks or months to get an appointment. And this assumes that the person is not incarcerated: People living in jails, prisons, and immigrant detention centers experience high rates of mental health challenges and are denied access to quality mental health care.

Caregivers, parents, and people working multiple jobs have an even higher barrier to access because of the hefty time barriers to research, call, book, and travel to appointments in hopes of finding a good match.

Everyone needs an array of wellness options, all of which they can fully access in an affordable and timely manner.

2. Informed Consent

Most of us are not fully informed of the effects that medications and treatments will have on us. I only knew a small fraction of the effects of the medications I have been prescribed, and the effects have been far-reaching and debilitating. While some medication effects lasted for the time I was on the drug (daily panic attacks, suicidal ideation, hives, insomnia/hypersomnia, cold sweats, and more) other medication effects I experience are permanent. For instance, I was not informed by my psychiatrist that my ongoing use of Lithium may lead to an irreversible thyroid disorder, a condition I’m now told I will have for the rest of my life.

Mental health providers have a responsibility to fully inform us and receive consent. Because this often does not happen, I always recommend that before someone opts for a treatment, they do their own independent research if they have the emotional capacity and ability to do so.

We are not consenting unless we are truly informed, have options, and possess the ability to say “no.”

3. Self-Determination

We need to be able to determine our own course of wellness without doctors or loved ones making decisions on our behalf. If I choose to live without medication and I am not harming others in the process, that is my prerogative. If I choose to live on a medication cocktail after being fully informed of the effects, that is also my prerogative. Wellness is different for each of us: While doctors and loved ones may act as helpful consultants and guides, we need full autonomy in decision-making.

A common response to the notion of mental health self-determination is, “What about when a person is in crisis and can’t make decisions for themselves anymore because they are suicidal, hallucinating, or manic?” These situations are incredibly challenging for all parties involved —even if loved ones and doctors have good intentions, it can be hard to chart a course of action that centers wellness, particularly considering how few quality options are available. This is why we have tools like Wellness Recovery Action Plans (WRAP). They are essentially mental health advanced directives: We can fill them out when in a state of (relative) wellness and share them with our loved ones and providers in the hopes that we can maintain self-determination and receive optimal support even in times of crisis.

WRAP Plans can include early signs that your mental wellness is slipping, who to contact and who not to contact in a crisis, and how you like to receive support. For example, you can list out that you want to be cared for with friends bringing over food and staying with you through the night, going to the park or being with animals, a particular song or movie, a religious or spiritual practice, helping clean up your space and do your laundry, calling a trusted therapist, whether or not you want to be hospitalized and where you prefer to go, which doctors you trust, and more.

Documenting a personal crisis plan may not completely curb our ability to maintain self-determination in crisis, but it can decrease the likelihood of additional trauma and forced hospitalization while maintaining our right to self-determination.

Photo by Jay Mantri. Image description: The Norway tunnel in Black and White, the right lane is clear, the left lane has a motorcycle and car with headlights on

4. Dignity — Identity-Centered Care

The medical field in the US is overwhelmingly white and cisgender. Many people of color cannot find doctors and support groups with whom they can speak openly about the effects of racism, intergenerational trauma, and other forms of discrimination on their mental wellbeing.

Queer and transgender folks often have a very challenging time finding providers who both know how to support them and understand the challenges and nuances of navigating a straight, cisgender world. People with physical disabilities and people of size face discrimination and misdiagnosis by doctors. Those with overlapping marginalized identities face these barriers compounded.

There are emerging resources to help fill in these deep gaps, including a database of providers from the National Queer and Trans Therapists of Color Network, but we still have a long way to go. People of all backgrounds need the ability to easily find places of wellness and providers with whom they feel welcome, respected, and supported.

5. Decriminalization

When our friends and family in US need help supporting us during crisis, their only option is generally to call 911. But because we have coupled the mental health system and the criminal justice system, undertrained police officers are usually the first responders in mental health crises.

Available data shows that at least half of the people killed by police in the US have mental health challenges. People of color — particularly Black people — face disproportionate risk of violence in police encounters. When in crisis, we don’t need to be handcuffed and dragged to a jail or hospital by armed police officers, we need resources and trained mental health professionals.

Community alternatives to police intervention exist and need investment. For instance, CAHOOTS (Crisis Assistance Helping Out On The Streets) is a mobile crisis intervention service based in Eugene, Oregon that’s been around since 1989. They are dispatched to crises and over 60% of clients are homeless. Each van has a certified EMT and a trained mental health crisis worker. They offer confidential, voluntary, and free services to people who are struggling but don’t need police or a hospital. CAHOOTS transports homeless people to shelters then support them with ongoing case management. The program also saves the local police department over $4.5 million per year.

In August 2017, a Colorado law will take effect that will make it against the law to put people in jail when picked up on mental health holds. The legislation also “increases funds for a network of crisis-response teams, walk-in mental health treatment centers and transportation to treatment from rural areas.”

A mental health system without police intervention is possible, necessary, and gaining momentum across the US.

6. Community Support

In our families, workplaces, religious communities, and friend groups, we often face stigma and lack of support for our mental health challenges. While mental health stigma manifests differently across communities, stigma is cited as a top reason for not seeking mental health support across demographics. Many of us feel shame in opening up about our challenges for fear of retribution, judgement, mocking, or additional social isolation. We are commonly labeled weak for seeking out therapy or taking medication. This stigma can be deadly.

Mental health challenges are not merely one individual’s problem to solve on their own — they often plague entire communities and continue on in cycles of intergenerational trauma. Addressing mental health should not be an individual burden but a community priority. Platforms like Rest for Resistance and No More Martyrs help to hold space for mental health community and conversations that are often marginalized from the mainstream. We need more online and offline spaces that welcome people with mental health challenges to openly share and collectively heal.

7. Paradigm Shift

People with mental health challenges and providers alike need a paradigm shift in the way we understand mental health. Many providers are afraid to hold space for our “dangerous gifts” and the ways in which we can understand our brains and lives beyond pathology. Providers are trained to closely follow a diagnostic model protocol utilizing the DSM. This often reduces us to a series of symptoms with narrow options for treatment. A lot of providers are well-intentioned and although they don’t like living under the old paradigm of pathology-based treatment, but they are afraid to stray from entrenched ways of thinking in the medical field.

We all need to broaden our understanding of neurodivergence and expand treatment options for mental wellness.

I hope these seven tenets can act as a iterative framework for advocacy in the mental health community. While the tools we use to access wellness — as best we can under systems that aren’t built for many of us to thrive — are deeply personal, our ability to access them with autonomy, dignity, and choice is universal.