2002 NAMI Illinois’ Consumer Council
Consumer Survival Guide
We do not have to travel
the journey
alone
NAMI Illinois and Lilly
Written by Mental Health Consumers for Consumers
“Mental Illness is what I have and can do without.”
We’ve been there. We want to give you some tips, so your journey can be smoother than ours has been.
Special Thanks to:
2001-2002 NAMI – IL Consumer Council
Guy Czmyrid (Coordinator)
Pat Warczynski
Greg Coughlin
Ecker Mental Health Center
Donna Willey
Amy Woolard
Alice Tsai
Millie Anliker
Dr. Sharon Paloucek
Tim Keyes
Caryle Casale
The Growing Place
Laura Jardine
Barb Kroll
Funded by - NAMI- Illinois & Lilly
©2002
This guide is designed to be of assistance to people in recovery from mental illness.
What is Mental Illness?
Mental illness is a biological brain disease like any other physical disease. Mental illness is caused by a chemical imbalance that can cause our brain, emotions, and behavior to be altered. Like diabetes or epilepsy, it is treatable with the right medicine. Counseling can also be helpful.
Who is a consumer?
A consumer is a person who consumes or uses mental health services.
Recovery
Recovery means different things to different people. It is a growth process of working toward improved mental health. It includes self-discovery, self-renewal, and transformation. Recovery is individualized. It might mean staying out of the hospital or it might mean going back to work after being off work for ten years. As consumers, we should take an active part in our own recovery journey. Recovery can occur even though symptoms reoccur. The key is hope, hard work, action, and a positive attitude.
How do we know we are in a crisis?
Symptoms that are warning signs are different for every person. If symptoms persist, that are not ordinary for you, this indicates a personal crisis.
Symptoms may include:
Ø Feeling more anxious, scared or panicky than usual
Ø Having problems that seem overwhelming
Ø Feeling a dire loss of hope
Ø Being unable to make decisions
Ø Having non-stop voices and visions
Ø Getting angry real easily
Ø Crying a lot and feeling suicidal
Ø Having a difficult time concentrating
When symptoms appear which suggest we may be getting sick again...
What should consumers know about medication?
The first goal in any treatment plan is to control the symptoms of mental illness. In nearly all cases, this requires medication. The medicines used to fight mental illness are known as psychotropic medications. The major classes of psychotropic medications are:
· Antipsychotics
· Antidepressants
· Mood-stabilizers
· Anti-anxiety medications
Psychotropic medicines are quite safe when properly used. It can take some time to reach the right balance of meds.
1. Know which medicines that you are taking and why.
2. Know the side effects & how to manage them.
3. Keep in mind that there is educational information available at the library, NAMI offices, clinics, hospitals, and pharmacies.
4. Remember to take medication as prescribed.
5. Some adjustments may be needed in the medication. This may be due to:
· People respond differently to medications, so several may have to be tried.
· Dosages may need to be adjusted as treatment progresses.
· More than one medication may be needed-due to others symptoms or treatable side effects.
What are Antidepressant Medications?
These medications are used for the treatment of depression. They may also be used for obsessive-compulsive disorder and other anxiety disorders. Some effects may be seen in 1 to 3 weeks though full response may require 4 to 6 weeks to occur. The duration of treatment is at least one year but may be used indefinitely for severe or relapsing conditions.
There are several different classes of these medications with differing side effects and precautions. Always check with your health provider for information. If one class is not effective or its side effects too bothersome, another class may be tried.
What are Antipsychotic Medications?
These medications are used in the treatment of psychosis, which may be seen with disorders such as schizophrenia, bipolar illness, and dementia. They are generally divided into two classes known as the “typical” or older antipychotics and the “atypical” or newer antipsychotics. The difference between the two classes is mainly in the side effects seen, although there is also
variance in each class itself. If one medication does not seem to be helpful or too bothersome of side effects, another can be tried.
Although they are not habit forming, antidepressants or antipsychotics should not be stopped abruptly.
What are Mood Stabilizers
These medications are used in the treatment of bipolar illness. They also can be used in the treatment of depression, post traumatic stress disorder and personality disorders. Many of these medications are also used in the treatment of seizure disorder. Most of them require periodic blood levels drawn as they have a narrow margin between their effective and toxic levels.
Improvement in mood stability may require 1-3 weeks. Avoid excessive amounts of caffeine containing drinks as these may counteract the effects of the mood stabilizers. Although they are not habit forming, mood stabilizers should not be stopped abruptly.
What are Anti-anxiety Medications
These medications are used in the treatment of anxiety, panic disorder, insomnia, and alcohol withdrawal. There are a few different classes of these medications, some of which are habit forming. Do not abruptly stop taking the medication. Avoid excessive amounts of caffeine containing drinks as these may counteract the effects. Some are prescribed to be given only on a “prn” or “as needed” basis.
As with all medications, take as directed by your health care provider. Be sure to inform them of any adverse reactions you may be experiencing. Let them know how you are doing and how your symptoms are responding to the meds.
What should we as consumers tell our doctors?
1. Previous medical history.
2. Our medication issues and fears. Write down our questions and other concerns.
3. Tell the doctor about specific side effects and other symptoms or problems, how long and how often they occur, and how much of a bother they are.
4. When making an appointment to discuss concerns with the doctor be polite, but persistent.
Tips for getting better
We need to take an active part in managing our disease. This means working with our treatment team to find the right medications and treatment choices for us. Accept that we have a mental illness as diagnosed. We have to remember to be patient. Progress we can see and feel may take time.
· Take meds as prescribed.
· Be aware of symptoms & write down questions for your doctor. Don’t lie to your doctor or therapist.
· Be your own best advocate!
· Get involved in outside activities (exercise, join a local NAMI group, hobby, volunteer, work part time…).
· Again, keep your doctor informed of how you are feeling.
· Have a daily routine of activity. Spend time on activities you enjoy.
· Stay away from alcohol & drugs.
· Get a regular amount of sleep.
· Make & keep appointments for therapy & counseling.
· Find professionals you are comfortable with.
· Keep a list of all your current medications with you.
· Educate yourself about your illness.
· Attend a support group regularly.
Sometimes weekends are especially hard for some people to get through. Here are some ideas on what to do on weekends or any days you are having difficulty:
1. Get together with friends
2. Go to a support group
3. Get involved in a place of worship
4. Listen to music
5. Crochet or knit
6. Do fun things
7. Be realistic
8. Watch TV, videos or DVDs
9. Go shopping
10. Be with people
11. Sleep late
12. Make sure you have crisis numbers on hand
IF ALL ELSE FAILS: “Pray for Mondays.”
Remember that we have choices and rights. Just because we are mentally ill, doesn’t mean we don’t know what’s good for us!
Stigma
“You finally decide to get help, and then you’re punished for it—pigeonholed into a diagnosis, shamed, labeled, and discriminated against. The stigma can be worse than the illness.” Stigma is defined as a mark of shame against a person for some reason. In the case of people with mental illnesses, it is because we have a mental illness, and not because the discriminating person knows us as a person. It is like discrimination or prejudice. It is immediate dislike or rejection because of some superficial attribute of a person. Stigma, like all discrimination, is wrong and needs to be stamped out.
Stigma is about disrespect. You and I deserve respect and understanding. We need to find confidence and healthy self-esteem. Then we can begin to educate people. Others have to learn that we are people, for example, people with schizophrenia, not “that schizophrenic.” We have many abilities. Others have to learn we cannot be defined just by limitations. Terms that are condescending must be avoided. We will face stigma along our journey. All too often, mental illnesses are targets in films, print media, and TV. We need to write letters and stand up for the decency we deserve. Only by stopping and saying to yourself, “This is wrong and unkind. I am going to speak up against this stigma. I am going to be an instrument to educate others who disrespect me. I am going to make a difference.” will stigma against people who have a mental illness be erased.
What is an Advanced Directive?
It is a document that outlines treatment when you become hospitalized or incapacitated. It gives preferences for treatment, medications, doctors, and hospitalization. It suggests how you want to be treated by your family. Documents can be obtained by calling: 800-346-4572 (NAMI IL) or 312-793-5900 (Guardianship & Advocacy)
What are our rights if we are involuntarily committed?
When we get to the hospital, we have the right to talk to a patient advocate. We have the right to make a phone call. Call Equip for Equality at 1-800-537-2632.
Read the rights of patients, which should be posted in the unit. We can also sign a five-day release. The hospital has to either discharge us in 5 days or a judge will determine what should be done.
What should consumers do if we are arrested?
1. Be cooperative
2. Let the police know you need medicine & that you have a mental illness.
3. Seek counsel (get a lawyer)
4. Contact your psychiatrist
Hints for dealing with your parents
Listen to them Love & respect them
Treat them fairly Forgive them
Ask for what you need
It is good to try to work through your own issues with them through therapy &/or groups, then you will have more understanding & even compassion for their own struggles.
What are our housing options?
While in the hospital, a social worker on the unit should help us find appropriate housing if it is needed. Ask for this help if it is not provided. After getting out of the hospital, it is sometimes good to transition back into the community at a halfway house, ICF (Intermediate Care Facility), group home, or transitional living arrangement. Each level of care has their own rules, chores, behavior code, requirements for daily activity (such as volunteering, being in a workshop, working part-time…) and medication/psychiatrist monitoring. Cost, unfortunately, often determine for you which type of arrangement is best for you.
If you have worked through this system and are ready for your own apartment there is Section 8, HUD, and CHA (in Chicago). They usually have long waiting lists, so get on the list as soon as you know you will need this housing. Getting on the list can be frustrating, but be determined, and it will eventually turn out to benefit you.
How can a Consumer Develop a Relapse Prevention Plan
Ø Stress is a major contributor to relapse. Learn what your stressors are and together with your treatment team, find ways to reduce stress. If you don’t have a treatment team or the psychiatrist or social worker or other professional aren’t including you in decisions effecting you, now is the time to look for new ones, not when you are ill.
Ø The consumer, family, and psychiatrist should discuss together previous episodes to identify a pattern of relapse indicators that are unique to the individual.
Ø The consumer should write down what works and what to do the next time there are indicators of relapse.
Ø Medications should be discussed.
Ø One should get more support, either at home, going to a program like respite or to a hospital for acute treatment.
Ø Develop a list of triggers and a way to combat each one.
Ø Alcohol, street drugs, caffeine, nicotine, and abuse of prescription drugs all play a part of relapse, so these should be eliminated if possible.
Ø Try to catch the emergence of symptoms yourself. You will be more apt to cope with them positively. You will be proud that you are in control.
What should we do if we think we can’t work?
1. Take care of physical/mental/ & spiritual health needs foremost.
2. Gain structure (PHP – Partial Hospitalization Program, PSR – Psychosocial Rehab program)
3. Talk to our case manager about what we should do. Go over options,---volunteering, school.
4. Get benefits organized (SSI & SSDI) Resources, including Public Aid).
Benefits planning & help:
| Chicago: Lavonzelle Paige | (312) 746-5743 | |
| Rest of State: | ||
| OMH: Tarnish Kuyendall | (312) 814-7196 | |
| ORS: Laura Gallagher Watkin | (217) 558-6317 | |
| Social Security Administration | (800) 772-1213 | |
|
“Red Book on Work Incentives”
SSA Pub. No. 64-030 |
||
|
“Understanding Supplemental Security Income”
SSA Pub. No. 17-008 | www/ssa.gov | |
| Health and Disability Advocates | (312) 223-9600 | www.hdadvocates.org |
| Rural Institute on Disability | (877) 243-2476 | www.ruralinstitute.umt.edu |
| "It Doesn’t Take A Rocket Scientist” | ||
Is there hope?
“Yes, there is hope. Sometimes things seem so bleak but people do care about you. Just tell yourself that suicide is not an option for you. Things will get better. Just believe that & hang in there.”
“Yes, there is hope for recovery but little hope that stigma will be eliminated in our life-time.”
“Yes, there is hope if you have faith in yourself and follow your doctor’s orders.”
“Yes, there is hope if you follow treatment procedures---seeking a counselor & psychiatrist, going to support groups & day treatment, taking meds as prescribed, having a support system & having other treatment options. MOST IMPORTANTLY BE YOUR OWN ADVOCATE and understand your illness.”
“Most definitely! Research shows that one-day medicine may actually alleviate all of our symptoms. There is hope for a cure. Already many people have recovered further with recently developed medicine.”
“Of course! There are many medications, which are being researched. There is more national concern, publicity, and education about mental illness. Help is out there.”
Special resources to know about
| NAMI-IL | (800) 346-4572 | www.illinois.nami.org |
| Family Assistance Program/Home Based Program. This Illinois program is based only on a lottery. Apply as soon as you can. They will reimburse for goods, services, and transportation (NOT food, clothing, or shelter). |
(800) 843-6154 Ext. 3 | |
| The National Mental Health Self-Help Clearing House | (800) 553-4539 | www.mhselfhelp.org |
| HUD housing counseling | (888) 466-3487 | www.hud.gov/homeless/ |
| Illinois Department of Public Aid | (312) 793-4706 | |
| Food Stamp Eligibility | (800) 252-8635 | |
| Americans with Disabilities Act (ADA) | (800) 669-4000 | |
| Illinois Guardianship & Advocacy (legal help) | (866) 274-8023 | |
|
Lifeline
Telephone bill discounts if you are on Medicaid, LINK, Energy Assistance Program, HUD, or SSI. Contact your local phone company. |
Self Help Groups
You are not alone!
| Anorexia & Associated Disorders | 1-847-831-3438 | |
| Anxiety Disorders | 1-301-231-9350 | |
| Emotions Anonymous | 1-708-383-0200 | |
| Grow | 1-773-283-5134 | |
| Mental Health Association | 1-312-368-9070 | |
| NAMI of Greater Chicago | 1-312-563-0445 | |
| National Depressive & Manic Depression Association | 1-800-826-3632 | www.ndmda.org |
| Obsessive Compulsive | 1-203-878-5669 | |
| Recovery | 1-312-337-5661 | |
| Schizophrenia Anonymous | 1-800-482-9534 | |
| Self-Help Center | 1-217-352-0099 |
For more information, contact
The National Alliance on Mental Illness
NAMI of Greater Chicago
1536 West Chicago Avenue
Chicago, IL 60622
312-563-0445
Fax 312-563-0467