Coping

T.L.’s Story – 43 – Ontario

Family Coping with First-Episode Psychosis

When my daughter was diagnosed with her first episode of psychosis nine years ago at the PEPP clinic, our whole family began a journey to live better. I still can’t believe it, but I managed to quit smoking, stick to a routine at the gym, and eat healthy over the years. I am the last person you’d expect to make significant lifestyle changes. I was a 4-5 cup of coffee a day and junk food junkie from way back! There was nothing I liked more than drinking coffee in the afternoons at the computer and eating handfuls of candy while watching movies on the weekend!!

My partner made several changes in his life as well. He’s learned to manage his time and prioritize responsibilities to keep stress levels low. He continues to learn not to get too caught up in work to offset financial demands caused by psychosis. He’s figured out how to balance work and play in an effort to stay healthy. My boyfriend makes time for himself to enjoy outdoor activities whenever as he can to maintain his energy.

I’d say reevaluating our lives was inevitable during my daughters’ recovery from first episode psychosis. It was impossible not to be affected by sound advice I found on-line for my daughter to reduce stress, eat nutritiously, and engage in positive relationships with others. A healthier approach to living didn’t happen overnight, but over time our family made incremental changes we’re still benefiting from.

It was especially important for my partner and me to be fit early in my daughter’s recovery. For the first few years my daughter leaned on us a lot for emotional and financial support. We had to make sure we had the wherewithal to cope any additional demands caused by psychosis. We wouldn’t be too much help if we were both burnt out!

For our family any burdens caused by first episode psychosis evolved over time. My daughter’s needs and abilities changed and my boyfriend and I made a point of adapting to new levels of health and independence. The first two years coping with psychosis were the hardest. “Everything is new – there’s so much to learn and everyone in the family is trying to find their footing.” After the first year things got easier for me. My daughter tells me for her it took about a year for the ‘fog of psychosis’ to lift. In the second year coping was a bit more straight forward it seems.

In no uncertain terms coping with psychosis had been in a team effort in our family. Brain disease forced lifestyle changes that weren’t always easy, but by embracing health we’re all better off. My daughter is getting set to move onto a new phase in her life and I’m thinking my boyfriend and I might enjoy a canoe trip together this year. I think after all the healthy living I’ll be able to paddle the canoe without getting too tired soon after launching from shore!

– A Mom

A Mother’s Story

J’s Story – Ontario

My daughter was diagnosed with schizophrenia in 2002 and it was like stepping into a nightmare for our whole family. Our prior experiences with mental illness with other family members held many painful and negative associations.

Through the hospital where she was first treated my daughter was referred to an early treatment program for psychosis. She almost missed out on the opportunity to be accepted by this program because she was prescribed medication for psychosis in the community before her hospitalization. Because the early intervention program in our community is research based, to qualify for admission, patients could not have taken medication for psychosis prior to admission to the program. My daughter had not complied with the medication she was prescribed and we could provide proof, therefore she was admitted to the program. Within the program there were many treatments and supports available for the patient and family.

I question why general practitioners or psychiatrists in our community would treat, rather than refer patients to a program where a patient would receive so many treatments and supports. A person with psychosis can have a very difficult time accessing services and supports that are not coordinated. I saw for myself how she could have lost her apartment because she did not fill out forms or did not fill out forms properly and I saw she needed assistance until she was able to deal with the stresses of daily living.

As I mentioned many of our associations with mental illness were painful and negative. We found ourselves seeking out someone with schizophrenia who was living successfully with the illness rather than being a victim of the illness. We hoped to find a person who was going to school or working and dealing with issues such as acceptance, disclosure, medication, sexuality, substance abuse, finances, fitness, pregnancy, careers and any issues adolescent and young adults’ need to address.

The early intervention program offered peer support and counseling and we sought out and found young people who were willing to meet and encourage my daughter and this has helped immeasurably.

My daughter experienced psychosis and was commanded by visions and voices to harm herself. She was cutting herself and was commanded to jump from moving cars and off buildings. During her stay in hospital we had discovered she could draw her illness and experiences and we found we could then discuss her thoughts and feelings through the art and we were able to talk in greater detail and with more understanding than with words alone. Being told she had mental illness filled her with pain and fear of the future and there was no way except through the art she could express what she was feeling in a unique way that held meaning for her.

When she came home she was still harming herself and we discovered that through art she was able to express herself and relieve herself of these harmful thoughts on paper and move away from self harm. In our experience art has played a very important role. We have journals and pictures of my daughter’s journey through mental illness.

My daughter is now going to university part time and working part time in the art business. She is called upon to speak with individuals with schizophrenia and with community and mental health groups about her illness and recovery. Her struggle with psychosis takes a lot of courage, faith and belief in herself and in the mental health system. Thanks to early intervention my daughter is able to have hope in the return to a normal and productive life.

Music

S’s Story – 29 -Ontario

How music has been my saving grace- Music is the language of the universe. It’s the pulse of everything in existence. Everything has a pulse or rhythm. This form of expression is a very special and almost sacred gift to those involved. I feel privileged to bring music into the world for others to hear. My sheer purpose in making music is to make others lives a little more joyful.

Music really has been my saving grace through a life that hasn’t always been easy. As a child I always had a lot of fears of things around me. These could have been prodromal symptoms of psychosis. I remember the days when I didn’t have anything good to say about myself. So I wrote about what I felt. Little did I know these writings were some of my first songs.

I write about many things, but the most personal are about the stages I had to go through to become well again. Dealing with the stigma has not been easy. You always hear something on the news, or in the media about the negative things that someone they call “crazy” did. What about all the positives that are happening in the field of mental health as well as the fact a number of people with mental illness are now living normal productive lives.

I look at becoming stricken with this illness as a blessing in disguise. My life would be much less meaningful had I not experienced what I did. As well there would be one less voice to help bring about change and compassion for those who develop Schizophrenia.

My life is actually shaping up pretty well these days. I’m helping run The PEPP Peer Support Group in my hometown of London, Ontario. As well my musical career is taking off (I have just finished my first studio album of original songs), as well I am learning slowly but surly how to take better care of myself. All and all my future looks pretty nice. Right about now I’m scared and excited about what’s around the next corner, aren’t you?

from M.

M’s Story

I was diagnosed with psychosis more than ten years ago. I spent time in hospital on different occasions. Despite this and with the help of my psychiatrist, my friends and my family, I was able to complete my very challenging university degree. Since then, I have been working on a full-time and part time basis and have been able to support myself . The great thing is that I have been taking good care of my health. I have developed resilience by overcoming many obstacles with the support of many caring people around me. Today, I am happy to live a fulfilling and well rounded life. I live independently, I am able to work, I have friends, I have hobbies, and I serve on a number of committees to advocate for persons with disabilities. Perhaps if I had not got sick, I would not have discovered a number of opportunities for personal and professional growth. These experiences are what make my life rewarding and who I am today.

Survivor

C.M.’s Story – 24 – British Columbia

The only thing worse than having a mental illness is finally admitting you need help. Who would want to be labeled mentally ill? I learned of the stigma of mental illness at a very young age. My father was diagnosed with schizophrenia and all I heard is that he was ‘crazy’. This made my life very hard. I was convinced I had to suffer in silence, because I didn’t want to be “crazy”!

“Say hi to the crazy bugger for me!” I’ll never forget those words (describing my father), they echo in my head. And so I began my battle with the stigma of mental illness.

I was a shy child and like some shy girls this led to low self-esteem. In my case this led to social anxiety and because of a chemical imbalance I inherited, my anxiety led to paranoia. In high school I was sure I was being watched (at all times). But it wasn’t until I got to college I realized who was watching me. Here my elaborate, psychotic (but quiet) break from reality begins.

In the four years following I came to believe that our universe was created by Aliens and they were watching us develop (like in a Petri dish). But unfortunately they were disappointed in how we polluted our earth and how we treated each other (i.e. wars). So they decided to try again (a new universe!) But they needed someone to ‘run’ it, for it to remain peaceful and clean. This is when they contacted me, and began to prepare me to be Queen.

They talked to me daily and reminded me I was beautiful. I told no-one about my delusions and no-one suspected, because I did not show the ‘signs’ of schizophrenia, my father displayed; lack of self care, apathy and social withdrawal. I knew these were the signs, and I feared the stigma so much – I had to prove I was not crazy!!! So I compensated to prove I was not sick. Therefore I must have had some insight but the scientist helped by telling me that if I was labeled sick or put in a hospital I’d be stripped of my Queen status.

I was quite happy with my secret for a long time. My self- confidence soared until I graduated college and the stress of finding a real job kicked in. Stress made the symptoms stronger and I lost all touch with reality.

I was alone and the aliens said they had to crawl into my body (to see my insides) so they could clone me and populate the new universe. They got stuck in my hands; they were afraid and screaming and told me to cut myself to let them out. When I began to cut I got scared and called for help.

I ended up in the hospital and I would like to describe to you what the first while was like but I have no memory. I have foggy pieces of memories for along time after getting out also. I was entered into the PEPP program and received the help I needed. Help for understanding the illness, contacting financial services, employment counseling, medication, cognitive therapy, etc. But no one understood how I felt! Why I had to cut and how devastated I was to realize I was not a Queen (just a normal person). There just weren’t enough descriptive words in the English language. So I began express myself with art. My mom (my advocate, biggest support, best friend and hero) has gone as far as to state “art helped to save my daughters life!”

For me, there is no recovery, there is no drive to be back to my old self. I feel born again, brand new. I will always take my medication (to stay in this world and it was two years convincing me of that) but I have, and still am, re-evaluating my whole existence and belief system. I don’t know where I’m going or what I’ll be (career wise). I have some ideas, and when I decide NOTHING WILL STOP ME! But I’m going to do it all in this world!