Living with an Autoimmune Disease
Picture yourself in a room full of your vibrant women friends and family members. Next, have your group count off from one to five. Every fifth gal needs to step away from the group. How many females in your circle of friends and family are now standing off to the side?
This is a visual of how many women’s lives will be affected by an autoimmune disease — one in five. Seventy-five percent of all cases of autoimmune diseases are diagnosed in women.
So, chances are very good that you or someone you know will fall into this category. With these diseases being so prevalent, it is important to take charge of your health. Chronic pain and fatigue can be signs that something is not working right.
What is an autoimmune disease?
Currently, there are 80 identified autoimmune diseases, and as with any disease, early intervention can make all the difference. An easy to understand and step-by-step description is found in the book, “The Autoimmune Connection,” by Rita Barron-Faust and Jill P.Buyon, M.D. The authors explain it this way, “Simply put, somewhere along the line, your immune cells got the wrong message. Your body dispatched the battalions of cells that normally recognize and eliminate foreign invaders such as bacteria to instead destroy healthy tissue. The attack can target any area, including the joints (causing rheumatoid arthritis), the thyroid gland (causing it to become overactive or underactive) or nerve cells (leading to multiple sclerosis).”
Our immune systems, which are designed to protect us, have now become our enemies and we’re left wondering why?
What causes the immune system to break down?
That is the question scientists are trying to answer. It is widely believed that genes play a part in predisposing a person to an autoimmune disease. But, just having the gene doesn’t seem to be the only factor involved in developing these diseases. Researchers believe that it is probably a combination of genes and other triggers that cause the body to react and begin attacking itself. Since women in childbearing age are most often affected, some of those triggers could be hormones or pregnancy. Environmental factors, stress and viruses are also being looked at as contributing to these diseases.
Right now there are no concrete answers as to what chain of events cause these diseases to manifest.
For many patients, the onset of an autoimmune disease feels similar to having the flu. There is a feeling of fatigue or malaise; inflammation in the joints is common along with dizziness. From there, the symptoms vary according to the disease.
“Carol” was diagnosed with Rheumatoid Arthritis, a disorder that causes the immune system to attack the joints, resulting in immobility due to pain, twenty-years ago. She can still remember the beginning stages: “I was so tired. I felt like I was coming down with something, but never got sick; I just felt so run-down.” She said at first she was told it was probably pre-menopause. But when her elbows began to hurt, she knew something was really wrong.
“Debbie” discovered she had Psoriatic Arthritis, inflammation of the joints, when she was 38 years old. “I was having trouble sleeping,” she said. Any position was painful.” Anything Debbie did to try to get comfortable didn’t provide relief. “One day at work, I remember the date, November 17, 1998, I had a stabbing pain in my knee and couldn’t walk,” she explained. “My co-workers helped me to my car. When I got home my husband had to help me in the house. I had no idea what was wrong with me.”
In addition, many autoimmune diseases share similar symptoms, according to the U.S. Department of Health and Human Services (womenshealth.gov).
Getting a proper diagnosis
It can take a combination of tests and seeing specialists that are familiar with these unusual symptoms and diseases to ensure a proper diagnosis. Doctors that specialize in fields that diagnose autoimmune diseases include those who are a rheumatologist, endocrinologist, gastroenterologist, dermatologist, hematologist, nephrologists and neurologist.
So, for many it isn’t surprising that their condition isn’t immediately recognized. In the book, “Women and Autoimmune Disease,” by Robert G. Lahita, M.D., Ph.D., the author states that autoimmune diseases “are among the most poorly understood and recognized illnesses.” He further explains that, “The main reason autoimmune diseases are so difficult to diagnose is that there are no definitive diagnostic laboratory tests.”
There can also be periods of times when the disease is not as active. Patients then believe that they “just had a virus.” Then, another flare up will happen and the patient is back in a cycle of pain, fatigue and confusion. And, many people will go several years before even talking to a physician about their symptoms.
After switching doctors and explaining her symptoms, Carol’s doctor suggested a blood work-up and visiting a rheumatologist. Once diagnosed, she was relieved. “After two years I finally had a name for what was wrong with me,” she said. “It wasn’t just my imagination.”
Debbie realized she needed immediate help and said, “When I called my doctor, he knew something was really wrong with me — I am not a complainer. When I went to see him, he did a blood workup and referred me to a specialist.” But to her dismay, the new doctor made her feel it was in her head. “He never did any tests, he just put me on steroids.” But through her persistence, she went back to her primary doctor and got the name of another specialist. “This new doctor was amazing,” she said. “I had a bunch of tests and finally found out what was going on.”
There are no cures for autoimmune diseases. The battle is to keep the pain and symptoms under control and to prevent the disease from further destroying healthy tissues, joints or organs. These diseases can be life threatening if not treated. Many times it can take months to find the right drug protocol for a patient. There are side effects with many of the medicines used, and patients have to be aware of those risks, too.
Carol began taking a rheumatoid arthritis medicine and was thrilled to discover she could once again strap on her favorite high heels without pain. But there were side effects. “I was feeling great for about three months and then I broke out in this horrible rash,” she said. “Another medication I took worked for five years, then I developed cataracts and needed to stop taking it.” During the next few years she tried a variety of drugs that worked for a small duration of time. Eventually the pain returned, but thankfully she found a drug protocol that has worked well for the last three years.
Debbie has also tried different medications, looking for that successful combination. She explained, “I started using a medication that seemed to be working well. Then after six years, I developed high blood pressure, and they discovered I had nodules on my lungs.” She had a lung biopsy and it was determined that she needed to change medications. After trial and error, she said she is now on what she calls “miracle juice,” which is working for now, but she said she is “already anticipating the next step.”
Additionally, people with autoimmune diseases are at an increased risk for developing additional autoimmune diseases. It’s important to be aware of changes in symptoms and communicate with the doctor.
The emotional toll
Not only are these diseases devastating on a body, they also take their toll on the emotional life of the patient. Discovering you have a long-term illness, which can not only leave you disabled, but also perhaps end your life, can be an overwhelming prospect.
Carol had dealt with her disease for more than 10 years before she talked to her doctor about her mental wellbeing. “I just felt I couldn’t cope anymore. I kept changing medications, they all had such extreme side effects, and I was in pain and stressed out. I know my disease was getting worse because of the stress I felt. My doctor prescribed an anti-depressant. This has helped me feel more balanced.”
Debbie found that it was her husband who couldn’t cope. “When we discovered what I had and that it was a chronic condition, my husband said that he couldn’t be tied down with a sick wife and 3 kids.” Debbie’s husband left her. But in the end, Debbie found this was for the best: “My children and I have become very close. They understand that I have some bad days and help me physically, and support me.”
Once on the proper course of treatment, most people realize their lives have to change. For most, it takes time to discover what in their daily lives has now become an obstacle and how to work around it.
Carol found that she could no longer work, but doesn’t let it keep her from living. “At 63, I feel I’m doing okay. I tell my husband that we need to get out there and do something physical to ‘oil our joints’ and stay in shape,” she said.
Debbie also found she needed to keep living her life. “I wanted to be all I could be. My doctor told me, “You need to be all you can be, but accept you can’t be — who you were.” Debbie enjoys gardening and being outdoors but has cut back on the hiking and biking.
When stricken with an autoimmune disease, it’s important to learn your limits while still pursuing your dreams. But always keep track of how you feel and trust your instincts.