Living With Primary Immunodeficiencies

A SUMMARY OF DO NOT'S WE SHOULD BE AWARE OF

Do not allow negative energy to dominate you. This can wear you out physically and emotionally, so that eventually it can even change your personality into a tired, withdrawn, sorrowful, angry, or complaining martyr. It is easy to go through periods of feeling very sorry for the member of your family who has an immunodeficiency, or for yourself, but this can isolate your friends and even your spouse or partner. Those
with primary immunodeficiency often suffer from fatigue also, particularly when they have a chronic or low grade infection. At this time chemicals are released into the blood that cause a variety of symptoms including weariness, loss of appetite, weakness, moodiness, and even depression. The state of mind may need to be treated also just as the physical illness needs to be treated. Discuss this with your doctor. Do not ignore depression.

Do not allow caregiving for the sick to so dominate your family that you neglect the needs of your other children or spouse. Jealous siblings or jealous immune deficient children could become a secondary problem to deal with. It is only normal that the sick child may feel left out of many activities the other children are enjoying, or the siblings might feel neglected when your focus is on the sick child. Do not let resentment become a permanent attitude. All family members have to sacrifice sometimes. There simply are things you will occasionally have to give up - a family vacation, planned excursion, evening out, school field-trip, camp, birthday party, etc. Sickness comes at inopportune times and you will need to adjust to this and find ways to compensate for those disappointments. Do fun things on the spur of the moment on the good days and allow less important things to wait.Don't stop planning and doing, but be realistic, of course. Try to do as much as possible inspite of your circumstances. A father of two sons took turns taking each one alone on an excursion of the child's choice. Each son received the full attention of their father during an interesting and fun outing, and the sibling of the child with the disorder accepted disappointments at other times due to his brother's illnesses without resentment.

Do not suffocate your child with too much love and over-protection. Our children with primary immunodeficiency need extra TLC (Tender Loving Care) at times, but then let go and allow your child to experience life. Discuss the necessary restrictions for your child with his doctor, but in most cases, let him go to camp, backpacking, play in sports (even when it means spending the rest of the day lying around the house very tired), and let him be outside in cold weather. Know the health conditions of his playmates, in case he needs to avoid some children at times, but do not overdo it. Do not let fear of sickness hang a dark cloud over your lives. Let your child take certain risks and grow up unafraid. This will result in a continued desire to pursue interesting experiences during healthy periods. An American university student with Common Variable Immunodeficiency (CVI) was allowed to go backpacking alone in Australia and New Zealand.This young man's parents trusted his good judgment in taking care of himself. He returned home weeks later very tired but thrilled with his experience and a renewed confidence in his abilities. Through the years of coping with primary immunodeficiency your child will learn what his/her abilities and limitations are, and will adjust to the limitations. As parents we must not forget to emphasize and support his/her abilities, not just dwell on the limitations.

Do not accept a lack of communication. Talk, talk, talk in your family. It is just a matter of interested questioning which leads to good discussion and understanding. It is easy to do this with healthy, active children, but some parents may feel more reticent to hear what their sick child has to say, but that is exactly what you need to keep in touch with. This is especially necessary during the adolescent and teen years when your child may become more private and unwilling to express his fears and frustrations. Do not wait for him to bring it up - ask.

Parents may choose not to talk about the emotional stress in order to protect the primary immunodeficient child from possible painful discussion, and the child may think he is protecting his parents by not expressing his true feelings, all the while missing valuable time and opportunities to share and help one another through the stressful times.

Do not try to be everything to everybody. Somehow we think we can be superhuman. Wrong! We do not have to be a volunteer in school or community organizations, so do not let anyone make you feel guilty for not helping. Stand firm. Say NO! Keep yourself calm and in good health so that you can focus your energies on your family and yourself. Put off trying to be an excellent housekeeper or gardener (unless that is your therapy). Make time for yourself. This is easier said than done, but it is important for you to have pleasureable activity and not become consumed with being a caregiver to your child or partner.

Do not let your marital relationship suffer. Being a caregiver to a sick child is time consuming and emotionally and physically draining from loss of sleep and the strain of living with illness and trips to doctors and hospitals. This can be damaging to a marriage, The mother may become too much of a full-time home nurse and neglect the needs of her husband. She must be sensitive to his additional responsibilities and pressures at work. Likewise, the husband must be sensitive to what his wife is going through all day caring for a sick child while he is at work, and should not put additional demands on her. If both parents work there is additional stress. Both need to be understanding, unselfish, patient, and willing to work out the problems that may occur. Take time for the two of you to be alone, to simply sit down together at the end of the day without the TV or noise and interruptions of the children. Declare "Mum and Dad's Talk Time- Do not Disturb"

Do not be afraid to ask for help! Parents of immune deficient children or a spouse of an adult with primary immunodeficiency learn to be vigilant, organized, decisive and calm, but this can give the impression they do not need help. There are times when the most experienced and capable caregiver needs help - time to yourself for an hour or a morning, a simple errand, a chance to rest and to catch up on much needed sleep, or someone to listen to you when you are hurting. When someone says, "Call me if you need anything, call!

Just remember, you are not alone. There are many who have had or are having the same experiences you are having. As mentioned before, there are patient organizations in each of the IPOPI member nations available to you by telephone, and some by E-Mail and FAX. IPOPI has a web site with a Chat Room and Forum for your interaction. Many of the national organizations hold local meetings with excellent speakers from the medical sector, and they send informative newsletters and print valuable publications. If you do not live near enough to attend their meetings perhaps audio tapes of the talks or discussions could be loaned to you by mail.

Self-help books can be found at the local library and bookstores, and for more personal assistance, hospitals have counselors. Do not be embarrassed, ashamed or afraid to get this professional help.