It’s been a few days now since Igal left us and I struggle to assemble coherent thoughts about how I’m feeling. I oscillate between numbness, anger, disbelief and anguish. In my mind, as if on a loop, I hear his voice and his laugh and see him smile. I don’t know what he’s saying, but I know he is telling a funny story. I also see the static and the silence of the times he would disconnect from us and retreat into his private world. Most every time he’d return to us from that retreat, except for this time. Igal, I will miss you so much.

Bearing the death of a person you care about is never easy. There is grief and there is a lot of mundane work to do. Notify people, plan the funeral, plan the memorial, process the deceased’s belongings, wrap-up their financial affairs. I feel so grateful for the closeness of the tech community here and for the circle of friends I consider family within that community. We have come together in an extraordinary way to help bear each other’s burden. I suppose if anything good can come from Igal’s departure (aside from the cessation of his suffering) is the knowledge of how much love we have for each other.

What makes the burden heavier, though, are the reactions by some who are less educated about mental health issues and who have little familiarity with what it is like to live with a history of trauma and chronic illness.

Comments such as “if we had only seen the signs,” imply that those of us who saw the signs didn’t do enough to help Igal. They imply that being aware that someone is depressed is the end all be all of helping them. It’s not. Simply knowing that someone has an illness does not give you the ability to cure them. We have very poor treatments for most mental health conditions and no cures. The treatments we do have come with an array of negative side effects, and in most cases simply seeking out treatment puts one on path of stigmatization and marginalization for the rest of their life. It also puts one’s autonomy at considerable risk.

Imploring those to reach out to their loved ones who might be in despair implies that suicidal people just need to know they are cared about. Most of the time they already know that they are loved and that people want to help them and often that is just one more obligation which makes their existence unbearable.

Similarly, encouraging those in despair to “just talk with someone,” is almost useless and very likely harmful. Responding to depression requires response by trained professionals. It is not a task for a lay person. Lay people not only lack knowledge about how to treat depression, they are lack necessary skills for managing their own emotional response to the distressed person. Mental health practitioners are specifically trained in how to temper their emotional state when others are in distress so that they don’t burden those they are trying to help.

The unpleasant truth of the matter is that there is very little you can do when one has decided to hide themselves away and refuse all connection with the outside world.

What we can do is to accept suicide as the societal problem it is and recognize that we all need to be involved in making our world a more livable place. Obviously this is a huge task and not something accomplished overnight or by a single individual. However, there are some things each of us can do right now:

1. Recognize the prevalence of chronic (including mental) health issues. Think of the last user group you attended or the last time you were with a large group of friends. Got it? Okay. At least half of those people live with some kind of chronic health concern, including: depression, bi-polar, (complex) PTSD, ADHD, anxiety, chronic pain, and/or a history of trauma. If you’re thinking that’s not possible because so many of those individuals seem happy and engaged, then know that assumption is part of the problem.
2. Recognize that those with chronic illness/pain are treated as lesser individuals. We are labeled weak for not being able to simply power through our illnesses as if it were a matter of will. We are labeled slackers by our co-workers if it is known that we take more time off work than they do to receive necessary medical treatment. Very little effort is put into modifying work and social environments to make them safer and more productive spaces for us to live in. When we outright ask for accommodations we are often told no, no one else is complaining, every one is treated equally. Our rights and privileges are reduced as soon as it is recorded that we have sought treatment for our conditions. Sometimes we loose autonomy altogether, or never had it full in the first place.
3. Recognize the extreme pressure to pass as normal and the enormous energy required to do so. Because of the stigma associated with our conditions, we feel a great pressure to pass as normal by hiding our struggles entirely. Doing so takes a lot of energy and we are already exhausted from working much harder than our healthier counterparts to attend to the everyday tasks of life as well as managing our conditions.
4. Work towards creating safe, inclusive environments. We should not wait to be asked to create safer and more inclusive environments for those with chronic health issues. We need to continually examine the spaces we help create and ask ourselves if they are welcoming to those who struggle. Is the space free of obvious triggers? Is there a quiet place where one can retreat when respite is needed? Is there a code of conduct in place to reduce the chance of re-victimization? Do we employ ablest phrases? Are people empowered to adjust the nature of their participation according to what they can currently give? Are they still considered full participants? Are we talking about our own chronic health struggles when we are able to do so?

This list is by no means exhaustive. It just happens to be what I’m thinking about now, in terms of my own community and how we are responding to the loss of a dear friend. I hope that we can transform the the pain of this experience into some kind of positive change. That would be a good way to honor Igal’s life.

Note: For simplicity, I’m using “chronic health” to refer to both chronic physical and mental health conditions. Most mental health conditions are chronic and often concomitant with physical ones.