The excerpt below is from our livestream about Suicide and Duchenne. Thank you to our guest, psychologist Dr. Natalie Truba of Nationwide Children’s Hospital. Click here for the full webinar.
Suicidal Ideation and Duchenne
There’s been an increased rate of suicide recently, even in children who are physically fine.
This means that suicide has increased in a population where people actually have the opportunity to do all the things they want to do, where they don’t have the stressors associated with missing dystrophin or having a dystrophinopathy brain, and they don’t have all the vulnerability factors associated with having a chronic illness either.
So, why would we think that our Duchenne community has been spared from the increased stress and distress that everyone else is experiencing – on top of having a life limiting chronic condition that is very challenging?
Experiencing passive suicidal ideation is likely much more common than you think and I think it’s definitely a shared experience in our community. Probably, if everybody was actually honest about I’ve had these experiences, you’d be like, oh, man, it’s probably most of us.
I also think we have a lot of improvements to make so that our community doesn’t continue to experience so much suffering.
Prejudice, Judgement and Discrimination
The world is not designed for you to easily do the things that you want to do. Prejudice, judgment and discrimination tend to be barriers preventing you. Other people need to make accommodations and if they don’t do that, it’s a particularly hellish place to live.
And now we’re seeing problems within disability communities regarding a very different type of passive ideation. It presents as:
- or the wish you didn’t exist (which is actually pretty common)
- a desire to not have to deal with what you’re dealing with
- or the wish you could escape
- or the wish you didn’t have to be here
These are particularly true when those chronic diseases – like Duchenne – involve things that impact your ability to live life how you want to. So, you may be more inclined to passive suicidal ideations if you have pain, or if your disease takes away opportunities to do those things that give meaning to your life (or if it makes it harder to do them) or if other people respond to you in ways that aren’t necessarily fair to who you are as a person and what you’re capable of.
Passive suicidal ideations often accompany navigating a really complicated medical condition that is progressive over time. And when you are totally cognitively capable and still fully intact neurologically, then declining physical functioning is understandably incredibly, incredibly hard to cope with.
And I actually get more nervous when people say, Oh, I’m fine. I don’t have any issues. This is great. I love this. That’s weird, right? It’s more normal to be like, Know what? This sucks. And I’m not okay.
What we all want to do is just get rid of Duchenne so we didn’t have to deal with it. And this is what’s hard, I think. You want to change something but you don’t have the control to change it. Because if you could just go live life and do the things you want to do, “I would be better.” And you’re right you would be. If Duchenne would just change, life really would be better.
If you’re having so much suffering and pain that you wish that you weren’t here – that you just didn’t exist – you might find yourself being one of those people, like,”I don’t want to kill myself. But if I get hit by a car, I’d be like, Okay.”
That’s concerning, because that means you’re in a lot of pain, you’re struggling and you’re suffering. And that’s not an okay way to live – even if you don’t want to actually kill yourself – that’s still not a good way to live.
A lot of the suffering comes from things out of your control that we don’t actually have ways to fix. And living in that space – or just striving to change something that we literally have no control over – that thought loop is going to make suffering persist. But we don’t want to get stuck there because then that evolves into a worse place: active suicidal ideation.
If those thought loops progress into active ideation, then it’s definitely time to seek help. At that point, we are potentially really putting ourselves in danger – or one of our loved ones is – and so you need to get involved as soon as possible, right?
So, the elephant in the room for y’all is that there are times that you want to kill yourself but can’t. There’s an inability to actually follow through with any suicidal thoughts you might have. Suicide is not an option because you’ve got to have the means to do it. And you don’t.
So being trapped in a position that you didn’t ask for is a very ripe situation to find yourself with feelings like I just wish I didn’t have to deal with this. I just wish I could escape.
But when you have Duchenne, it’s a whole new ballgame to try to manage and to cope. Even if you wanted to just momentarily escape – with just a drink – you would still have to have somebody help you.
I’m in the chat here in our zoom meeting. DJ Kimble shared with us that most of his thoughts about suicidal ideation begin as passive, “but I have issues with resetting myself to calm down and it just keeps building till I find myself begging for it to end with no options to actually be able to do it.”
If we don’t have control over a situation or over certain things, there are other ways that we can make changes – like working on our reactions to accept certain pieces of it. And when we work through that, we develop skills, and we can use those skills for bigger things in the future. That’s where therapy comes in.
So it’s easier to stay ahead and be proactive and learn these skills on the front end. Then, when we’re digging out of a big mental health hole where we’re really, really struggling – and we are really having a hard time seeing how we can get relief so that we don’t feel so much burden – then we can use those skills we learned to actually get out of that hole.