Chapter 3 Educating Yourself

1. What do I want to know?

Let’s look at what the gastroenterologist told me during his diagnosis and my responses to what he said. It is obvious that we were not communicating well. A lot of harm was done in this first interview.

HIS words MY thoughts
You have Crohns. What’s that?
We don’t know what causes it. That doesn’t sound good. What is it?
We don’t know how to cure it. Oh no, that’s bad!
You will have it for the rest of your life. Which will be short as I’m going to die of fright any second!
You’ll probably only operate at about 80% or less of your normal capacity from now on. I can’t live like that. But I can’t live like this. He’s saying there’s nothing I can do about it.
Cortisone drugs are the only course of treatment, and you will have to be monitored continually for harmful side effects. They will harm me. That’s not an option. I feel powerless. I feel hopeless. This doctor doesn’t care.

At this point I was crying. My husband looked like he was going to attack the specialist, and the specialist appeared to be irritated. His body language indicated he thought I was weak, silly, and wasting his precious time. This was not a propitious time to ask burning questions. More afraid of the doctor than the disease, I walked out of there with minimal and negative information – perfectly set-up for deterioration in my condition.

Hopefully, you’ll have a doctor and specialist who deal with you compassionately, and who are experienced enough to know now is the time to answer questions. A good doctor will lead you through the information he thinks you need to know now. Often they will withhold information because they don’t think you are capable of absorbing it at the moment, or they are concerned with feeding you negative psychosomatic messages. If your doctor knows you well, or she is qualified to make decisions about withholding information. However, a specialist, who has only seen you once or twice, should not make this call. You may not realize information is being withheld, so it’s up to you to ask if they’ve told you everything and request another appointment for a time you feel more capable of dealing with information and asking questions.

Just as you should never delay in taking a health concern to your doctor, out of fear for what you might hear, neither should you delay in requesting a time to discuss your condition at length. Some things that can happen if you don’t discuss your disease and the treatment are:

• You may have side-effects from the treatment your doctor describes and think they are part of the disease.
• You may continue with habits or routines that are damaging to you.
• You may not be doing something that would help to improve your condition.
• You’ll continue to react on an emotional basis rather than take a proactive informed attitude.

There are many ways to find out about disease. All of them should lead to the gathering of information that will enable you to help yourself. Experience with disease will teach you:

You must take charge of your own health.

The best education comes from the school of hard knocks. Terrible as these experiences are, they are lasting lessons, and with each one you develop a more acute warning system and safety net.

Most of the education I received was from living through the experience. Each hospital stay taught me more about what my body could or couldn’t tolerate, how to deal with nurses and doctors, how to stand up for myself, how to go about making decisions about treatment, when to fight and when to accept. I learned a great deal about the human anatomy, drugs, treatments, and the importance of listening to my body. I finally learned the cause and effect process within my own body that is the best tool for coping with my Crohns today. I know if I do A now, B will happen in 4 hours. If C is happening now, I’m going to have to do D and E immediately to contain the damage. This was a major breakthrough in self-treatment, as my husband often teased me about being more ignorant of my bodily functions than anyone he knew. If asked, I couldn’t even say if I’d gone to the bathroom that day.

2. How much do I want to know?

It is interesting to note that 80% of the people I interviewed, who had been diagnosed with a chronic disease, did not want detailed information from their doctor at the beginning of their diagnosis. They were satisfied with the information the doctor offered in that first meeting, based on the few questions they could think to ask. There are several reasons for this choice not to be better informed.

a) Denial: You may not want details that will force you to recognize the disease at work in your body and make you admit to having the disease.

b) Trust: You trust your doctor enough to believe he will tell you everything of importance.

c) Inexperience: You don’t know the questions to ask and therefore assume you have all the relevant information.

d) Rejection: You have already rejected the treatment the doctor has recommended and therefore are not willing to hear more information about it.

3. When do I want to know?

Of the people I interviewed with chronic disease, there were three different behaviors exhibited around dealing with self-education. You may identify with one of the following:

a) The Monitors
In the first scenario, 20% of those diagnosed wanted detailed information immediately. When they had all the information they could get from their doctor and specialist, in the form of spoken and written word, they researched further on their own. They wanted to know every detail, every possible prognosis and prepare themselves to deal with any circumstance of their disease.

Phillipa: I wasn’t supposed to have these symptoms. They didn’t go with my diagnosis and hadn’t been identified yet. I determined I had them myself by reading. When I could name them as Fibrocitis and Fibromyalgia they made sense. When I took that information to the doctor I could ask the questions I needed to get help.

b) The Blunters
The second group was also made up of 20% of those diagnosed with chronic disease. They had enough knowledge up front to have self-diagnosed. Their information came from digging for answers on their own, living with someone else that had the disease (possibly another family member), from advanced classes in university, or from working in the medical profession themselves. The specialist’s diagnosis did not come as a shock to them, but they didn’t want to accept it. If you fit into this category, the knowledge you have is more of a subconscious awareness. You don’t want to look at it closely in connection with yourself. You deny there is something wrong with you as long as possible and refuse to accommodate changes in your health into your life-style. Often you push yourself past the treatable stage to serious disease by refusing to face up to your symptoms.

Sylvia: I believe I had an innate sense that I had MS. Yet I hid my symptoms from myself for a year and a half. I made up all sorts of excuses for my weak legs and dizzy spells. When I finally went to the doctor after a bad fall, and he asked me what I thought was going on, I said Multiple Sclerosis. He wanted to know if I had a medical background. I don’t, and didn’t know anybody else with the disease. I don’t know how I knew. It was a strange thing.

c) The ignorant

By far the most common scenario was that experienced by 60% of those diagnosed. There is no psychological term for these people. I think of them as the ignorant. They had no knowledge of the disease they were told they had. They willingly accepted the information provided by doctor and specialist and left it at that until they were forced by the necessity for treatment, surgery or emergency to deal with another aspect of their disease. At that time they learned more information. Thus they added to their knowledge base increment by increment – almost always paying the price for ignorance with a bad experience. It could have been a drug overdose, being admitted to hospital on a weekend without realizing no tests will be run till Monday, or continuing with a doctor who was not right for them. Gradually, over time, hard lesson by hard lesson, they became experts on their disease.

I fit into this category. I was so-o-o-o ignorant. All of my lessons were painful. Typical of the society I grew up in, I was a young woman taught not to question her elders and at that time all the medical staff was older than I. I was taught not to argue with a stranger, make a scene, or be selfish, which pretty much included asking for anything for me. Because of my learned paradigms, I allowed myself to be overdosed, talked into treatments I felt were wrong for me, ignored when I was in severe pain or emotional crisis, and forced into embarrassing situations that could have been avoided. I suffered excruciating pain many times because I didn’t want to argue with the doctor treating me or question the technicians running tests on me. I learned that you have to push your comfort zone in every direction. You have to decide when to acquiesce and when to flatly refuse. You learn when to ring that buzzer and when to leave it alone. You need to find the courage to question a treatment before agreeing to it, to refuse a particular medicine, and to insist your doctor help you investigate other treatments. You need to be your own secret agent, researcher and commanding officer.

4. Who can help me become informed?

Information is out there and available if you want to proactively protect yourself. Some of the sources the chronically ill recommend are:

a) Doctors: Spoken information, sketches, diagrams, three-dimensional models and printed brochures are made available by your doctor.

b) Libraries: The trick here is to go through the computer catalogues and choose books with the most recent publication dates. That is not to say books published earlier do not have relevant material, but, if you rely only on a book published in 1986, you may do without important information on new treatments and advances in your disease. You can look up your disease by subject matter or a particular title of a book someone has recommended to you.

c) Internet: If you have a computer, simply do your research from home. The net has a vast amount of information on your disease. Check out health web sites and do a search by name of disease. There are now worldwide web sites that provide the most up-to-date information and treatment for many chronic diseases. You can become part of a global data bank and receive the newest information on the treatment of your disease immediately.

d) Reliable sources: You may want to set up a meeting with someone else who is coping well with the disease or request a volunteer visit you. This person can tell you what worked for them and what didn’t. You may find this encouraging or discouraging depending on how the information is passed on. Everyone wants to see someone who had the disease a lot worse than they have and who has conquered it. This is the most hope-inducing experience.

e) Counselors: Counseling is often provided by support groups. Volunteer members of the group share their own experience and answer your questions.

Maxine: While I was in hospital, scheduled to have my lower intestine removed and the remaining end stitched into a hole in my side from which my stool would empty into a pouch, I was frightened, demoralized and major depressed. A beautiful young university student visited me. She had already undergone the surgery I was waiting to have. She looked so healthy and, best of all, was wearing tight jeans which gave no indication she had a pouch attached to her. She was so joyfully going on with her life that it gave me the greatest incentive to get through the surgery and get on with mine. She was able to share her experience with me from a positive outlook.

f) Support groups: These groups exist on local, regional and national levels. You can join a support group for Arthritis, Lupus, Crohns and Colitis, Heart Disease or Diabetes. More recently support groups have been established for Chronic Fatigue Syndrome, S.A.D. and Fibromyalgia. Almost every disease is covered in the larger cities or regional areas. Here you will receive up-to-date information on the disease and its treatment, the experience of others with the same disease, and guest speakers who are experts in their field. As a member of a support group, you generally receive a newsletter or periodical published by the group on a monthly, bi-monthly or quarterly basis. This provides a great deal of the latest information on your disease. We will talk further about Support in Chapter 9 Support.

g) Television Documentaries: Often we can find documentaries to help us understand the disease we are living with. Your local library may carry video documentaries on your disease.

TIP: Ask your pharmacist for last year’s copy of the drugs encyclopedia (they’ll get a new one each year). This book will allow you to check each drug you are on and the possible side effects that you may not have been told by your doctor. Remember, if you gather this information, don’t use it to talk yourself into symptoms you don’t have. Sylvia

5. How can I help educate others?

a) Be willing to share

I have come to the realization that when I take the time to carefully explain the disease and how it affects me, I am doing something for every other Lupus patient and for many more who might soon be diagnosed. Or worse yet,
misdiagnosed. I decided that it was my duty, my responsibility to inform my friends and my co-workers. After all, how could I in one breath complain about the lack of information in the media, when I in turn was refusing to educate a portion of society when I had a perfect opportunity to stand up and be heard.

Anyone who has gone through years of dealing with a chronic disease, and thrived in spite of it, has a vast amount of experience to hand on. It amazed me that so few of those interviewed had any interest in doing so. However, it is in your own best interest, health wise, to reach out to others in some way to share your experience of your disease and living with a chronic condition. You will benefit in several ways.

 You will see that good can come out of bad.
 You will have the satisfaction of helping someone else deal with their disease
 You will receive tenfold the appreciation, love and respect of those you help.

There are several ways you can use your experience to reach out to others. For instance, I joined a support group and then agreed to become a hospital visitor. It allowed me to pass on the good work of my counselor to someone else. I answered questions for patients who were waiting for the same surgery I had. I always looked my best and talked about all the things I could do now, that I couldn’t before the surgery. It helped the men and women I visited go into the operating theatre with a positive attitude, one of the best guarantees you will recover from the surgery.

Matthew: I pass on information on an informal basis one-on-one. Even though I am not very old I have had Diabetes all my life so I know more than just about anyone I talk to. Some of my pharmacist friends will tell people who are upset to call me. I was able to tell one fellow about an updated treatment that his doctor didn’t even know about. He asked the doctor for it and told me it made a huge difference in his life.

“I’ve been sick so long I can teach the following courses: Creative suffering, Whine Your Way to Alienation, The Joys of Hypochondria, Biofeedback and How To Stop It, Skate Yourself to Regularity, and Sinus Drainage at home.” Sylvia

b) Pass on the good stuff

You can be part of a new preventative thrust. It’s not just the technical facts and statistics that others need to know about. Doctors can tell them that. You need to pass on the things the doctors, who haven’t the practical experience of living with the disease, don’t know. If you pass on your coping techniques, your philosophy and describe the things you do to bring quality of life to living with a chronic condition, you are teaching valuable life lessons to others.

Statistics show that a spouse or child living with someone who has a chronic disease has a much greater chance of developing a chronic disease of their own. It is imperative that you work to prevent this by bringing all of the best to your family – the right foods to build up the immune system, the coping techniques to deal with stress, an emphasis on eight hours of sleep, and the need for regular exercise.

When I learned the value of Biofeedback in hospital, I started teaching my children to slow down their bodies and deal with stress in a new way. If they hurt themselves, we worked at breathing through the pain. Often, when I tucked them in at night, I massaged their backs and they did deep breathing till they were calmed down. The added benefit was a deeper, more restoring sleep. They have taken these lessons into adulthood and deal with the stressors in their lives far better than I did at the same age.

c) Become a leader

If you’re living (and hopefully thriving) with invisible disease, you have a great deal to hand on and a responsibility to do it. I’m not asking you to go on a speaking tour, though many of you are qualified to do so. Some of you have the courage to grasp opportunities to help – like those who said a willing “yes” to being interviewed for this book. What you share will help many more people who have chronic disease and those who are touched by it. Keep yourself open to opportunities to reach out to others.

Phillipa: I joined the local Lupus support group, then became President of it and realized that there was no resource for the people running the groups. I became instrumental in setting up a national support group to feed information and funding to others so they had the opportunity to do their own coping and get ahead of their disease. I have been involved for over 20 years and have made many dear friends who have become my family.


1. Look up the closest support group to you, phone and ask them to send you their information.

2. Visit the library and check-out the latest book on your disease.

3. Go on the Internet – find your disease by name. Discuss what you learn with your doctor, and with permission, try one of the recommended treatments.

4. Begin to teach your children, partner, spouse and siblings coping techniques for dealing with stress.

5. Pass on what you learn about your disease to others. Share with them your positive life lessons.

6. Be a role model for an upbeat positive approach to dealing with challenges.

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