I’m a Mental Health Patient First

The conversation around mental health in the Muslim community has come a long way from when I first received my diagnosis. No longer are people questioning my need to take mood stabilizers and the like. Some people from my community even help me remember to take my medicine on time or when I exhibit symptoms. I now feel comfortable sharing humorous stories about some of my episodes. And I don’t often hear criticisms about what is assumed to be Western medicine anymore either; with respect to my medical team and treatment, I mean. In fact, I can’t remember the last time I heard such.

I reflected on this, and more, as I moderated an event for NAMI Metro Baltimore’s third annual faith and mental health conference at the Clifton Mansion last week. It was an honor to speak at this event and I felt blessed to be in attendance, as I was weathering the end of a manic episode. Spring typically finds me more active than usual, but I am now used to the change in daylight hours and elevated moods. My doctors know how to quickly get me back on a stable course, and for that, I’m grateful. In the past, I would have had to go to the hospital, but this time, my medication worked properly and in time, alhamdulillah.

Mostly, things are going well for me these days. And I’m happy to see the Muslim community joining in the mental health conversation alhamdulillah. But we still have some work to do. Years ago, I wrote an article sharing the many important parts of mental health advocacy. Just as there is more to mental illness than just depression and anxiety, there is more to advocacy than just one thing. It’s a big world that plays a major role in educating the public, helping to reduce stigma, helping vital legislation get passed, and bridging the gap between patients and caregivers.

I’m wondering if over time, and with education and news, the stigma around mental health in Muslim communities is beginning to lessen. But to reiterate, there is much more to a mental health patient’s life than just taking pills or not. And recovery from mental illness lasts a lifetime. A mental health patient must think about housing, family issues, legislation that affects their life, insurance issues, finances, transportation, spirituality, reproductive issues, stigma, disability (if applicable), systemic oppression, other marginalizations such as race and culture, etc. These are just a few of our lifelong concerns. Thus, why I bristle when someone only chooses to mention one of the many of challenges I face in my life. It’s hurtful to know that most people may be unaware of how complicated my life with mental illness truly is. And to see it reduced to ‘don’t take pills’ used to really sting.

But in truth, I’m often too hasty with my frustrations at the misconceptions I face. And once I realized that I was able to notice there was something else for me to tackle. The conversation though very productive has shifted into a different type of stigma amongst the Muslims. There’s a second wave of shame and blame happening. But thankfully, not only am I stronger than I was due to past difficulties, I’m able to learn from my mistakes. So, I’ve decided to use this as a teachable moment within my advocacy and write about what it’s like really be in the throes of a mental illness. And I wanted to explain why patient blaming, though possibly unintentional, can be harmful and destructive.

When my mom had cancer, I remember my closest friend telling me that I needed to be there for her, no matter what. She encouraged me to pray for the strength to endure the caregiving process. And not to wait for my mom to initiate contact. I think about that conversation often. I wonder why with physical maladies, we have that reaction, but with mental illness, we ask people to reach out if they need help. Or we ask them to tell us when they are experiencing symptoms. We also ask them to educate us how to better deal with their community in general, and how to eradicate stigma and ableism. And furthermore, we tell them that the problem wouldn’t even exist in the first place, if only they hadn’t gotten sick. Or if they’d told somebody what to do in the event they did get sick. Or if they’d left a contingency plan in place somewhere. Or if they were more visible so that people would notice when they’d gone missing. Something. Anything.

I see this all the time. And I’ve had it happen to me. It’s really one of those “flagpole” moments. I completely understand. As a parent, I’ve had those a million times. Thankfully I get it. But I still wanted to share a better way of handling it from my perspective.

When I’m in crisis, or rather, when I say I’ve been in crisis and then say I needed help and was alone, the first thing people will say is: Why didn’t you reach out? Why didn’t you tell anybody you wanted company? Why haven’t you gotten (Thus & So) help for this? Do you want to go to the hospital now? It seems strange or even ill-advised to leave the decision-making process up to the person who is unwell. Or even well but living with a mental illness. I don’t say this to cause alarm in any way or to stigmatize my population any further. However, when I am experiencing a mental health crisis, I’m not the best person to choose for reaching out. In fact, I am usually unable to do so. Whether in a depressive episode, manic, mixed, or experiencing some form of psychosis, I am not able to choose to reach out to friends and family as a well-minded decision.

It’s better for the community/support systems to check on a person living with mental illness than to place the onus of reaching out or educating the masses solely on the individual. As the ones experiencing illness, our burden level is already at max capacity. Since we know the believers are like one body, let’s challenge ourselves as a community to tackle this together rather than asking individuals to do more work than necessary. Please check on your friends and loved ones living with mental illness. Make it a habit just as you habitually visit those who are unable to come to the masjid for other reasons. Call and see how they’re doing. Reach out and check if they need anything, regularly. And most importantly, ask a person living with mental illness or a professional how to best serve their community’s needs, rather than expecting them to come to you. Waiting for your friend with mental illness to contact you means that you won’t know when they are in crisis. And moreover, waiting for them to call means you won’t know when they may be experiencing a moment they can’t handle. Isolation and loneliness are the worst parts of living with mental illness. And once the loneliness sets in, this is when the person is most vulnerable. It’s ill-advised for the Muslim to be in isolation anyway, but a believer alone experiencing mental health challenges is like Shaytan’s playground. And at this point, the person may not be able to choose to reach out or get themselves to the masjid for solace or fellowship with other Muslims.

My suggestion as to making sure a person living with mental illness maintains a positive connection with their local community is to first have one or two individuals from the community (Including the Imam) have a private conversation about their illness and how they would like to interact with the congregation. Then, things can progress from there. Each illness is different and each community is different with respect to stigma, knowledge, ableism, and respect of mental health culture. And until we are able to be honest about that, those living with mental illness may still experience varying levels of discrimination in different communities. In my area, a lot has changed and it is safe for me to be quite open about my challenges. However, that is definitely not the norm. Unfortunately, I did have an incident with one center, where I was sick and in need of services. And although the Imam was quite knowledgeable, the congregants told a sister to take me to the local shelter because they didn’t know what to do with me. I actually needed to go to the ER, as it turns out. This event happened only about a year ago, which is why I mention it here. There is still much educational work to be done in the fight against stigma in our communities. My goal is that one day, all of our masajid will be safe spaces for people like me, who would like to feel free to attend services, with the understanding that if we are experiencing a mental health crisis, someone will know what to do.

Stay tuned for part 2 of this series where I talk about the need for mental health first aid and ASIST Intervention training… 🙂