Meet Gemma, a blogger who has been fighting schizoaffective disorder and living a normal life. She blogs about living with mental illness with the aim of increasing awareness and sharing her story. Read Gemma’s blogs at http://madmatters.wordpress.com/.
Here Gemma provides an honest insight into her life, her condition, and her story. Hope you enjoy the interview.
Me: Tell us something about yourself?
Gemma: I’m not sure what to say! I’m 30 years old, and I’m originally from a small town on the South East coast of England. I met my husband while he was stationed with the Air Force in the UK, and we got stationed to Nebraska USA, which I actually like. Two cats, Charlie and Connor, own me and I’m a huge Star Wars nerd. I’m a Pantheist, which is a religious belief based on the idea that god and the Universe are the same thing, there are no personal gods. I have an irrational phobia of moths and butterflies. I’m a fairly decent cook, but when I break out the confectionery tools, I can blow people’s minds. It is a skill I was taught by my father, as he was taught by his father. I apologize that these are just random facts about me.
Me: At what point did your schizoaffective disorder start to appear?
Gemma: I was around 4 or 5 years old when I first started hearing voices. After that, the incidents just got more frequent until my early teens, at which point I was hearing voices daily. Now, I hear them daily, when I’m not on medication.
Me: Do you think the voices were part of what made it difficult for you to go on?
Gemma: Absolutely. I think that there is a lot about life that would have been so much easier had I not been dealing with these voices. There have been times when these voices have driven me to consider suicide; that is how bad it had got.
Me: Has treatment made your life easier? Is the regimen complicated?
Gemma: It took a long time for treatment to be worth it for me. Each drug comes with its own set of rules and side effects, and often they didn’t seem to be doing anything for my symptoms. My current regime consists of about 11 pills a day, including lithium and Lamictal (mood stabilizers), Latuda (an antipsychotic) and PRN (as needed) doses of other antipsychotics such as Zyprexa and Thorazine. It’s the first regime that worked for me and it took a long time to get there, so I’m pretty happy that we have something that works. Now that my symptoms are controlled, my life is definitely easier.
Me: In the blog titled, ‘my throat just closes up…’ you have explained your predicament very vividly. Where/whom do you turn to at times of a bad episode?
Gemma: Mostly I turn to my husband. And it’s taken me a long time to get to the point where I will turn to anybody for help. Before that, I would just turn inward and deal with everything by myself. Over time, I’ve learned to reach out and ask for help when things are really bad. He’s really the only person I trust to “read the fine print” as it were, and know what I’m saying even when I’m not saying it. He knows what’s wrong without me having to go into great amounts of detail about what is going on, and for that reason I feel safe going to him during a bad episode. I can also turn to my parents, but logistically that is very difficult due to the time differences etc between the US and the UK.
Me: You crochet very well. I have seen the pictures. You mention that crochet keeps you sane. Do you think other people in similar situations should take up a hobby/work/some kind of engagement that would help anchor their thoughts/voices and help them?
Gemma: I think everybody should have a hobby, especially people who experience difficulties. It gives you a sense of achievement, and can help you feel like you’ve done something, even if it’s only something small. When I first started crocheting I made endless scarves because it was all I could figure out how to do, but every stitch made me feel like I was achieving something, like I was working towards some great goal. And I think a lot of people could benefit from feeling that way, it really does help.
Me: Generally, the common people do not understand psychotic illness very well. They do not/cannot understand how someone can be intelligent, creative as well as have voices. What has been your experience?
Gemma: My experience has generally been a mix of both positive and negative. I’ve known people who tell me they think I’m amazing because I can be intelligent and creative despite these voices, and I’ve known people who have talked to me like I’m some kind of idiot or treated me as though I am dangerous or mentally subnormal as a result of my illness. This very much comes down to stigma and how the media etc present mental illness, there has been so much where people with mental illnesses have been presented as either being “insane” (like the straightjacket, bumping off the walls and drooling kind of insane) or dangerous that when presented with a real world case of something like Schizoaffective, people don’t know what to think. They can’t equate the “normal looking” person in front of them with the idea of the “crazy person” which is where, I think, the discrepancies come from.
Me: What are the three most important things that you feel a person with schizoaffective disorder needs to cope and survive the disorder?
Gemma: 1) Honesty. Be honest with yourself, your family and your doctor. Hiding symptoms or side effects only makes things worse in the long run. If you’re honest, then things get fixed quicker.
2) Patience. Medications take time to work, it takes time to see changes in symptoms. It can be really easy to want everything to happen yesterday, but it really does take time.
3) Laughter. It may seem like the hardest thing in the world, but try to carry on laughing. Even if you just look at a funny cat picture and smile once a day, it’s a start. It helps keep you positive and makes the whole thing so much easier to live with.
Thank you Gemma. It was great connecting with you.
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