This information was reviewed and approved by Alison Heru, MD (6/30/2012).
Individuals with mycobacterial diseases can have a wide variety of symptoms, including fatigue, weight loss, decreased appetite, fever, bloody sputum and cough. In other cases, the illness is diagnosed without any symptoms being present. Each of these situations present different challenges. For the patient with many symptoms there is often fear and confusion regarding new symptoms. What is wrong with me? Why can't I do the things I usually do? Am I going to be okay? For patients without symptoms, it can be a shock to be told of a serious disease that requires long-term treatment when you feel fine. It may be hard to believe the tests were accurate.
Once the diagnosis of mycobacterial disease is made, typical feelings include fear, shock, denial, anger, shame, and guilt. These feelings may come in waves and will gradually subside over time; however, it may be beneficial to have the help of a psychosocial clinician to aid in this process.
Feelings About an Infectious Disease
Shame is perhaps experienced more often in infectious diseases than other chronic illnesses—shame about having a contagious disease (in the case of tuberculosis [TB]), shame regarding the need to wear a mask and be in isolation temporarily. Although nontuberculous mycobacteria (NTM) disease is not contagious and does not require isolation, until the test results are finalized patients are often told they might have tuberculosis. In addition, precautions to prevent the spread of infection are practiced. Being placed in isolation may be one of the most difficult aspects of the disease. Patients struggle with feeling dirty, like an outcast, or as some have put it - "like a leper." If you share your feelings with other patients in your situation, it may help a great deal. Nontuberculous mycobacteria disease support groups are also a great source of comfort for patients. Find a support group in your area.
In general, the more support a person feels, the better he or she is able to cope. Even with support, however, wearing a mask and being isolated from others can be extremely difficult and distressing.
Effects on Relationships and Self Esteem
Other issues that may come up include fears of death or permanent disability, questions about the medications and possible side effects, and concerns about disruptions in lifestyle. You may be unable to work, leading to financial hardship for you and your family. Relatives and friends may be frightened by the diagnosis and may have difficulty being supportive for a period of time. Additionally, being ill often involves a change in one's relationships. You may have to depend on others a great deal more.
If you are used to being the caretaker, it can be extremely difficult to now need caretaking. If you are very independent, being even somewhat dependent can be very distressing. A parent who is ill must at times turn to a child for support; a spouse must turn to wife or husband in ways not previously needed.
Patients may experience guilt, anger, or sadness; family members and friends may experience similar feelings. A tremendous amount of flexibility is needed to adjust to the demands of illness. Finding ways of maintaining appropriate independence is very important. The goal is maintaining one's self-esteem through the challenges and difficulties of adjusting to a chronic illness.
Depression and Anxiety
The stress of having a chronic illness can be severe, leading to emotional distress. At times you may feel depressed or anxious. When our lives are significantly disrupted, we often experience some emotional difficulty. The symptoms of mycobacterial disease can include weakness, fatigue, loss of appetite and energy, shortness of breath—the very symptoms that often mark a state of depression or anxiety.
To further complicate issues, some of the medications used to treat mycobacterial infections can impact emotional functioning, cause agitation or confusion. It can be very difficult to sort out the various causes of depression and anxiety. It may require the joint efforts of you, your family, your doctors and nurses, and at times a psychosocial clinician. Temporary feelings of emotional distress are very common. When the depression or anxiety is severe or prolonged, however, it can lead to even further disability and can interfere with the progress of treatment.
It is very important that you tell your healthcare team of any emotional difficulties that you are experiencing so that a proper evaluation can occur. Depending on the specific cause of your depression or anxiety, medications may be changed, new medications for depression and anxiety may be recommended, different tests may be ordered and counseling may be suggested.
Sources of Support / Coping Activities
We have looked at various issues that you may have experienced as a result of your mycobacterial disease and its treatment. Chronic illnesses are severe stressors for most individuals. One's life is profoundly disrupted in many ways; physically, socially, emotionally, financially. Though many feelings are commonly expressed by patients with mycobacterial disease, each person experiences his or her illness in unique ways that reflect one's individual and cultural background.
There are coping strategies that many patients find helpful, each patient will also have developed individual ways of dealing with stressful situations. Emotional support is helpful to all people, healthy or ill. In times of sickness, our need for support is even greater. Support can come from relatives, friends, other patients, medical and nursing staff, counselors, priests, ministers, and rabbis. The source of support is not as important as the feeling that adequate support is available. Through talking with others we form connections and relationships that can ease the sense of isolation so common in chronic illness, especially if physical isolation is required for a time. Making your surroundings familiar can help decrease the feeling of being in a strange environment: this can involve anything from favorite pictures and music to having friends and relatives visit for part of the admission.
Activity is another very helpful tool in coping with illness. You may feel weak and tired, but staying in bed all day by oneself often worsens the fatigue and weakness; it can also lead to intense feelings of boredom. Activities can include physical therapy, relaxation exercises, reading in the hospital lounge, walking around the unit, or even sitting quietly in a chair on the sun deck.
For some people humor is a very powerful way of coping; for others, religious faith provides comfort and hope. When there are problems coping, talking with a professional counselor can help resolve the difficulty. Medication may be helpful in alleviating severe anxiety or depression. Though having a mycobacterial disease is difficult and frustrating, most patients can eventually find ways to adequately cope, looking forward to a time of improved health.
David E. Griffith, MD
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