The Meningitis Support Center

Every person is unique, but when you face a challenge like meningitis, you are never alone.  Countless men, women and children have faced the exact same diagnosis and have survived and thrived.  The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Internet and assembled links to the very best meningitis resources: articles, blogs, forums and tools that can help you make better decisions and take action to overcome the range of physical, emotional and other challenges that you face.

As you’ll see, we always welcome your ideas and suggestions to make this Meningitis Guide even more helpful to survivors like you.    

JUST FOUND OUT  

Survivors Say: Best Resources for Meningitis

• Centers for Disease Control and Prevention: Meningitis - Is it Viral or Bacterial?
• WebMD: Children's Vaccines Health Center - What is Meningitis?
• Mayo Clinic: Infectious Disease - Meningitis

The Big Picture

Meningitis is an infection of the fluid around the spinal cord and the fluid that surrounds the brain. It often affects children and young adults, although persons of any age can become infected.

Once diagnosed, it's important to be able to understand the specifics involved with your personal case of meningitis. Meningitis can have many causes; usually it is caused by a bacterial or a viral infection, and many of several types of bacteria or viruses can be responsible. It is important to know whether an individual case is caused by a virus or bacterium because the severity of illness and treatment differ.

WebMD: Children's Vaccines Health Center - Symptoms

Your Meningitis

To better understand your specific case of meningitis, find out exactly what type your meningitis is classified as. The WebMD Meningitis Overview explains how your doctor will determine the type of meningitis you have.

WebMD: Meningitis - Topic Overview

Your World

After being diagnosed with any potentially life-threatening disease, it's understandable for patients, as well as their families and friends, to experience a flood of emotions. To find information on whether or a not a support group may help you and your family deal with your meningitis diagnosis, follow this link:

Peace Health: Meningitis Helpline

Meningitis Myths

• You can only get meningitis by kissing someone who has it
• Meningitis only affects young children
  
• I've had the meningitis vaccine, so I'm not at risk
  

Information and Recommended Links for Survivors

• Mayo Clinic: Meningitis - Preparing For Your Appointment
• Centers for Disease Control and Prevention: Causes of Meningitis

Types of Treatment

Hospital treatment

Depending on the severity of the meningitis, treatment in the hospital may be necessary. Hospital treatments will likely include antibiotics, corticosteroid medicines and fever reducers.

WebMD: Meningitis - Treatment Overview

Home treatments

More mild cases of meningitis may be treatable at home. Home treatments include getting plenty of fluids and over-the-counter medications to control pain and fever.

AOL Health - Meningitis Home Treatment

Oxygen Therapy

Oxygen therapy may be necessary in extreme cases of meningitis treatment. Oxygen therapy is used to help patients breathe easier and reduce the effort of the heart.

WebMD: Meningitis - Other Treatment

Possible Treatment Side Effects

Most meningitis treatment involves using medications, including antibiotics, pain relievers and other medications, which could all have their own side effects.

Neurology Channel: Meningitis - Treatment, Prognosis, Prevention

New Therapies

The National Meningitis Association (NMA) website has constant updates about new therapies and prevention techniques for the treatment of meningitis.

Creating a Support Circle

• Set up your TSC Survivor Profile
• Join support groups of other survivors or set up your own
• Interact and provide updates on your profile or our forums

Healthcare Providers Who Can Help

Many different doctors may be involved in the diagnosis of meningitis, including general practitioners and pediatricians. Neurologists and other specialists are the physicians that generally treat meningitis, depending on the complications that arise from the disease. Pediatricians that specialize in these areas are also available for treating children with meningitis. Health care coverage plans will refer you to these professionals for a consultation.

Wrong Diagnosis: Doctors and Medical Specialists for Meningitis

Resources to Find Doctors

Meningitis is generally diagnosed by your primary physician, or emergency personnel. To find a doctor, contact your insurance company. To help you prepare for your appointment, visit this helpful link provided by the Mayo Clinic

Mayo Clinic: Meningitis - Preparing For Your Appointment

The Emotional Rollercoaster

Meningitis can be a debilitating disease, but if caught early enough it can often be easily treated. Prevention in the form of vaccination is often recommended, as the disease is contracted by thousands of people each year. If you have been diagnosed with meningitis, it can be helpful to continue to live your life normally if possible and also to join a support group and share your story with others who have been through the same journey. Books and research can also help you understand and heal from your experience with meningitis.

Books Survivors Recommend

• Bacterial Meningitis 
  
• Emerging Strategies in the Fight Against Meningitis
• Meningitis (Diseases and People)
  
• Meningitis (Health Alert)

What Survivors Wish They’d Known

Communicating with Your Health-care Providers

• Bring a friend or family member with you to your appointments not only to provide support but to lend an extra ear to understand everything your health-care provider has to say and to think up any more questions you may not realize are important at the time.
• Don't be afraid to ask any questions you feel you need the answer to, even if you may be scared of the answer. Ignorance won't help you fight this disease - emotionally or physically.
• Write down any questions you may have ahead of time and the answers to those questions as your health-care provider walks you through them.  Don't be afraid to ask for clarification on anything.

Dealing with Meningitis: Information for Co-Survivors

How you can help

• Assist your friend or family member with their day-to-day duties or chores, but be sure to find a good balance so as not to throw off their pattern of living, which may increase their stress as they may feel they are becoming a burden.
• Preserve your friend or family member's daily activities. It's normal to feel protective but excluding patients from activities or decisions you don't see them as fit enough to do or make contributes to feelings of helplessness.
• Involve your friend or family member with others. Don't focus exclusively on their disease and treatment plan when interacting with them. Talk to them about yourself or make plans to visit friends and loved ones. A survivor involved with others has a better chance of avoiding feelings of abandonment.

What to say    

• "This disease is often very treatable."
  
• "I'll help you learn as much about this disease as possible."
• Tell them how much you care about them

What not to say

• "Does this mean you have brain cancer?"
• "If you have bacterial meningitis, it doesn't look good for you."
• "I know someone who died from meningitis."
  

Things you can do for a survivor every day

Offering day-to-day support is a great gift to give a family member with meningitis or a friend/neighbor that has been stricken with this disease. If the survivor isn't a family member, help out the patient's family when they are away at hospitals or hotels by picking up the mail or newspaper, making meals, going grocery shopping, etc. If the survivor is a family member, help out with chores or other duties they may have fallen behind on.

How to build a support network

• Set up your TSC Co-Survivor Profile
• Create a support group for your friend or family member.
• Interact and provide updates

After recovery, assess and share with others how you feel emotionally, mentally and spiritually. Recovering from a disease like this can be a challenge for many people. By telling your story, you can not only put into perspective your thoughts and feelings but you can provide hope to others who are going through a similar journey themselves, whether it be with meningitis, another form of meningitis, or a completely different disease.

Remission / Recovery / Recurrence    

Emotionally dealing with remission of meningitis is difficult in that there is still much to do and the uncertainty of whether you are completely cured or may relapse in the future can leave you feeling unprotected.

Unfortunately, with meningitis, there are no proven risk factors or causes, offering few measures to patients in the way of relapse prevention. Survivors should be sure to schedule regular visits with a doctor to catch anything that may appear as soon as possible to increase the success of another treatment.

Check out this site for steps to take if your meningitis relapses. It offers emotional support and advice along with new treatment options and differences between treating a relapse and an initial diagnosis.

WebMD: Meningitis - Other Places To Get Help

Give Back

What helped you while you were dealing with the diagnosis, undergoing treatment and realized you had recovered? Take a look back at your journey and share with others what helped you and what you wished you would have known/done during your meningitis experience. You can create a profile, reach out to other survivors, join support circles or share your story by following the links at TheSurvivorsClub.org. Check out some of the best charities for supporting meningitis research or offering support to survivors:

National Meningitis Association

What can you do when you find out your meningitis treatment has failed? Many survivors refuse to cope with the possibility of death but by ignoring this possibility when your meningitis has become terminal, many patients and families find they are unprepared when the worst case happens. If you find out that your treatment has not taken effect and you have little time left, it's important to understand how to deal with death.

The Terminally Ill Person

For advice on overcoming challenges related to death from both a survivor and a co-survivor perspective, whether they be emotional, physical, spiritual or legal, read through:

Daily Strength: Meningitis Support Group