This is a great presentation/speech. I hope you can watch and share it! It really needs to go viral! Hopefully the correct video will play. It is a TED talk about mental illness and community.
Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?
The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.
Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.
Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.
In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.
Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!