As someone whose family has been affected by IgA Nephropathy, you know better than I that this disease is not well studied or understood. Other chronic health problems, like cancer, diabetes, and asthma, have higher profiles and have enjoyed more scientific attention. While there are certainly some emotional issues specific to particular diseases, there are many concerns relevant to any chronic disorder. What we’ve learned about adjusting to other more common diseases can be applied, with caution, to IgA Nephropathy.

The most common statement I hear from children with cancer or diabetes is "I just want to be a normal kid!" As much as adults enjoy being appreciated for our uniqueness, feeling different or singled-out from peers by illness can be tremendously difficult for children. For most, being "normal" means doing all the things that other kids do: playing the same games, eating the same foods, wearing the same clothes, going to the same places.

Supporting your child’s active participation in social and recreational activities reduces her isolation and helps promote self-confidence, peer support, and just plain fun. But many parents feel the need to protect their child from "overdoing" it. There may be some activities that would exacerbate certain symptoms of IgA Nephropathy, such as gross hematuria, and this is something that should be discussed with your physician. However, activities that don’t directly relate to symptoms should be allowed or even encouraged.

Another problem common to both adults and children with chronic illness occurs when symptoms become a good way to get what we want (or get out of what we don’t want). For example, if experiencing pain becomes a sure-fire reason to avoid attending school, going to dreaded social functions, or doing homework, then pain is directly reinforced and becomes a very valuable experience. Even if we don’t consciously intend to experience more pain as a way of avoiding these things, it can become part of a pattern that increases pain. To avoid this problem, encourage your child to express his feelings openly and to ask directly for what he needs. Open, healthy ways of communicating our needs and desires can help reduce the frequency and intensity of many symptoms

A certain number of patients with IgA Nephropathy experience pain, sometimes strong abdominal pain and sometimes flank pain of varying severity. Whatever the physical cause, there are several things that can make their pain worse: 1) if the pain is unpredictable; 2) if the pain is uncontrollable; 3) if they are anxious or fearful; and 4) if they are depressed.

1) Predictability. Since the pain involved in IgA Nephropathy is usually episodic, identifying any factors related to these episodes can be helpful. If you know what times, activities, emotional states, etc., are associated with the onset of flank or abdominal pain, that makes the pain more predictable and may help you get a head start on controlling it.

2) Controllability. Because medications are rarely successful in controlling the pain associated with IgA Nephropathy, techniques like relaxation training, self-hypnosis, abdominal breathing, and biofeedback may be more effective. These are tools that your child can be taught to use whenever she needs them. They have no detrimental side-effects and should help increase your child’s sense of control over her pain.

3) Anxiety and fear. Being afraid of pain makes good sense from the perspective of survival. Yet part of fear and anxiety is the increased arousal of many bodily systems: the heart rate goes up, breathing becomes more rapid, blood pressure and muscle tension increase, blood vessels to the hands and feet constrict, etc. This arousal actually heightens our experience of pain.

If pain increases our fear and anxious arousal increases our pain, we face an escalating spiral of pain and anxiety. Fear of pain can even contribute to the onset of a painful episode. Exercise or relaxation techniques can help us prevent the build-up of anxious arousal and thus control pain. Social support, reassurance, and the empathetic understanding of others are helpful as well.

4) Depression. Most of us feel more pain when depressed and we also feel less capable of rallying our resources to address the pain. Those who are severely depressed have great difficulty in helping themselves, in remaining socially active, and in feeling good about the things that are going well in their lives. As depression becomes worse, hopelessness and even suicidal ideas can grow dangerous.

Children are less likely than adults to talk about feeling depressed, down, or upset. If your child tells you about feeling down, it is important to take him seriously, offer support, and perhaps even seek professional help. Children are more likely to display depression by changing their behavior. If you notice any of the following changes in your child’s behavior, he or she may be experiencing depression:

One important thing to remember is that depression can be effectively treated. Sometimes medication is helpful, but depression can also be alleviated by therapies that do not use pharmaceuticals.

For most of us the thought of our child’s needing psychological help is very upsetting. We may wonder whether our child’s unhappiness, anxiety, or depression is just a natural reaction to illness, or is it a sign that there is something truly wrong and that psychological services are needed?

To frame the question like this can be a trap. It betrays our belief that we can only go for help if there is something drastically wrong. Philadelphia psychiatrist Dr. Troy Thompson uses this analogy:

Sometimes it makes send that someone would be distressed, anxious, or frightened, given their illness or life circumstances. That doesn’t mean that they need be left to suffer, especially if this worsens the physical illness and creates even more reason for them to be anxious. As parents, we should think of pursuing help for our child if we think it would alleviate the child’ suffering.

Another important consideration is the impact a disease like IgA Nephropathy has on other family members. Siblings may feel the child who is sick gets all the attention from parents and family; they may also resent missing outings or other opportunities because their brother or sister is ill. Conversely, they may feel guilty for having these feelings of anger and resentment; they may even try to deny themselves things they enjoy so as to ease their guilt. It is important for you to encourage your other children to pursue active, fulfilling lives, and to make clear to them that you love all your children equally, although your sick one may demand more of your time and attention.

The stress of being the parent of a chronically ill child can be consuming, resulting in anxiety for those of us who are the caregivers. Acknowledging that this can happen and that it is normal to feel overwhelmed at times is important – as is finding ways of relieving the stress. Taking care of the caregiver is in the patient’s best interests.

It is also important for all of us involved – patient, parents, siblings, and other family members – to make sure we pay attention not only to the physical disease but also to its emotional impact. For most patients, IgA Nephropathy is a very slow-moving disorder, but it can be a very disruptive one. Maximizing the patient’s quality of life should be as important as treating the disease and slowing its progression

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A psychologist, Dr. Bret A. Boyer is director of behavioral medicine at Mercy Catholic Medical Center in Philadelphia. Over the past decade he has worked with adults, adolescents, and children with diabetes, cancer, chronic pain, anxiety disorders, and depression. Dr. Boyer has written about families coping with painful medical treatment for childhood leukemia, the relaxation effects of diaphragmatic breathing, and childhood anxiety disorders.

[Reprinted from Network News, No. 5 (October 1995).]

Editor’s note: Depression is a real and very understandable problem for a significant number of those with IgAN, both children and adults. IgA Nephropathy classical strikes boys and, to a lesser extent, girls at the start of their teen years, just when fitting in with peers is most important. Often children and adolescents who are depressed do not look "sad." They may seem anxious, or withdrawn, or even angry; but as Dr. Boyer points out, changes in their behavior are the tip-off that something is seriously wrong.

Children may also be reluctant to talk frankly about their illness with their parents because they sense their parents are frightened and don’t wish to make things harder for them by sharing their own fears.