For those parents who have a child with lupus, do you still remember what is your first reaction when you learn that your precious child is being diagnosed with lupus? Do you break down, cry, frustrated, worried, scared, feelings lost or having thoughts of uncertainties?
Well, if you have encountered or reacted with these feelings, then it is generally normal! The facts is parents usually have trouble coping with a child’s illness especially in family where both parents are working and of course the lack of medical knowledge.
As such, when your child is diagnosed with lupus, you are responsible for his/ her physical and emotional well-being. Besides, it can be devastating for your family. This is because you may worry or fear that you will not be able to deal with the medical condition of your child.
On top of that, you may wonder if your family can possibly adapt to the lifestyle changes to suit the child with lupus. So how can you begin to help your child to cope with lupus? How to help him/ her to lead a “normal” life just like before?
9 Great Tips For Parents To Help Their Child In Coping With Lupus
#1 Tip: Learn To Cope With Your Own Emotions First
When your child was first diagnose with lupus, you may not been able to react at all. Most likely you may felt “separated” from your emotions with feelings of intense anger, sadness, fear, guilt or despair.
Of all these feelings, guilt and fear are probably the most destructive emotions since these 2 emotions can interfere with your acceptance of lupus and its treatment as a part of your life. The main point is tried not to let your child see your pain or unhappiness. Why?
When your child saw your negative emotions, he/ she will feel guilty and this will make things worse. So your must learn how to control your emotions and stay positive in front of your child. This will encourage your child to face the illness with confidence and develop a positive mindset.
How to overcome guilt?
Because of the “genetic predisposition” to lupus, many patients are afraid that they did something to contribute to the onset of their child’s illness. They feel guilty for bringing their child into this world, only to develop lupus. Some parent s may even think that if they have taken their child well, the illness will never develop.
Your feelings of guilt will not positively affect your ability to care for your child but rather lower your self-image and exhaust your emotional resources. This will leave you with less of the emotional energy you will need to help your child.
Therefore, if you catch yourself feeling guilty because your child has lupus, work on restructuring your thinking. Instead of telling yourself that you are a “bad” parent because your child develop lupus, remind yourself of how much you love your child. Besides, you should not dwell on what might have been had your child not developed lupus.
You should focus on the present and the future and concentrate on learning how to help your child cope with lupus. The idea is to turn your mind’s negative thoughts into reasonable, constructive and positive ones.
How to overcome fear?
It is naturally that you feel afraid when someone you love is diagnosed with a serious illness. And when this illness required the care and lifestyle changes that lupus does, you may be fearful that you will not be able to provide the kind of care which your child needs to grow op healthy.
Education is the key to overcoming your fears about your child well-being. Learn as much as you can about what is lupus, how it affects your child and how it can be treated and manage. Knowing the facts will help you feel more confident in your approach to treatment and allow you to communicate more effectively with your child’s doctor.
However, do keep in mind that you do not need to learn everything at once, otherwise you can easily become overwhelmed. Some parents get so caught up in learning about lupus that the disease seems to take over their lives. You must remember that your goal is to adapt to lupus as a normal part of your life, not to make lupus treatment the focus of your life.
Maintaining a positive attitude not only is essential in helping you to go through difficult times but also serve as a valuable role model for your children. If you are finding that you are getting too negative, take definitive steps to work on this and to improve your attitude and feelings. This is especially important if you really want to take care of your child.
#2 Tip: Gain Better Understand Of Your Child
It is not a surprise to know that children living with lupus may have difficulty adjusting and adapting to their new lives. They may find that the emotional consequences of the disease are just as painful to them as physical manifestations.
Learning to adjust to a diagnosis of lupus takes time, for children as well as for adults. Do not feel the need to push your child to accept the disease more quickly, simply because it would make it easier for all concerned if it is accepted. All this takes time to work through the varied emotions that typify the acceptance of the diagnosis of lupus.
Children with lupus will feel differently from those children who do not have the disease. There can be a stigma attached to being sick, having to go to the doctor, being hospitalized, taking medications, or any of the other very real problems that may exist for a child with lupus.
Then there are also the additional psychological concerns such as when children fear that being labeled as sick makes them different enough to be excluded or ostracized. Any of these issues may contribute to children having difficulty dealing with their peers.
There are many similarities between adults with lupus and children with lupus. There are certain symptoms that children are more likely to complain about such as arthritic symptoms, fatigue, fever, weight loss and the butterfly rash. The most common serious problem for children is kidney involvement that may not be symptomatic until serious. This may make it more difficult to get children to comply with treatment programs.
Difficulties faced by children with lupus include:
- Most children want to be like everyone else. They may have difficulty feeling different, or being seen as being different.
- They may not be able to do what other children can do. Their pain or fatigue may not be understood by their peers.
- Symptoms of lupus may affect them which made them feel differently from others. As medications are required, side effects may arise.
- They may required regular visits to the doctor more often than others and possibly be hospitalized.
- They may feel uneasy or uncomfortable when getting extra attention from teachers, or other individuals in a position of authority. This may cause resentment among peers, similar to the reactions of siblings that may occur if parents spend too much time doting on their child with lupus.
#3 Tip: Help Your Child With Constructive Ways
Managing your child with lupus should be done in a constructive manner by making it a regular part of your child’s life. It is not a good idea to reward your child just because he/she follow the treatment obediently.
You must set a good example by letting your child know that compliance and consistency are essential to lupus management, and emphasize the idea that the reward of his or her hard work is good health. As such, when your child is ready to take on the challenge of self-care, he or she will possess some good habits.
#4 Tip: Prepare Your Child For Life With Lupus
Prepare your child as much as possible for things he or she may experience. This can include symptoms, treatments, side effects, hospitalizations and difficulties dealing with other people. For example, by preparing your child for fatigue, it may not affect him or her quite as much as if he or she felt weak and had no idea why this was happening.
Consult the doctor with any questions. In addition to providing information realistically, at a level appropriate for the child and communication must be honest. For example, telling the child that it does not hurt when he/ she is preparing to undergo a procedure will damage the relationship and affect credibility of future communications.
Teach your child as many different coping strategies as possible for any specific encountered situations. Strategies should involve things that the child should do, as well as improved ways for the child to think.
#5 Tip: Encourage Communication Between You And Your Child
As your child help your child learn to cope with lupus, it is essential to keep the lines of communication open. Why? Because it is only through communications that you will learn how your child feels, physically and emotionally. And only by knowing how your child feels will you able to help. Encourage your child to share feelings, fears and practical concerns.
Try setting aside some special time when you can chat with your child. Make it a routine or a regular time for good conversation but not limit to the illness only. Rather, you should encourage your child to talk about any issues that he/ she is facing.
Listen to your child attentively and be aware of everything that your child is experiencing. If possible, work together to identify and come up with solutions to the problems caused by lupus. In fact, children need to be given the opportunity to ask any questions that they may have. You may be surprised at what is most important to your child.
But what if your child is reluctant to talk or ask questions? Do not try to force your child to open up if she/ he is not ready. Reassure your child that you will be available to talk or listen whenever he/ she would like. If you remind your child of this often enough, you can be sure that your child will come to you when they are ready.
#6 Tip: Unite Your Family
Keeping your family united is also essential. Any disagreements concerning your child or your child’s health should be aired privately. It can be very damaging for any child to learn that he/ she is the source of parental disagreement or dissension between a parent and another sibling.
In fact, it may be a challenge when family routines still have to continue as before. However, each family member must learn to live with any restrictions that lupus may impose.
#7 Tip: Be Aware Of Your Child’s Emotions
Children may experience many of the same emotions as adults in dealing with lupus. They may fear how lupus is going to affect them, affect their school activities and their friendships. Besides, they may also be afraid of an increased need for needles, blood tests, scans and other components required for treatment.
Otherwise, they may also be angry that this is happening to them. This is because they are now different from other children both in terms of physical appearance. They may also be angry that their activities are limited, cannot play for long hours, need more rest periods and when other children do not understand or tease them.
Sometimes, they may get frustrated that plans that have been made need to be canceled at the last minute because of lupus symptoms. Children may be angry at the unpredictability of lupus. Lastly, they may be depressed because of the limitations in their activities, or the impact on their schoolwork.
This depression may go hand in hand with a lower self-esteem with the pain, fatigue, weight changes or other physical manifestations which may be involved. Some of the symptoms to look out for depression in your child include grumpiness, sadness, suggestions of hopelessness, decreased interest in normal activities, lower grades, decreases in energy or having sleep problems.
#8 Tips: Keep Detailed Medical Records Of Your Child
You should establish a health care record on all aspects of your child’s life with lupus, making sure that all information will be in one place, and nothing will happen. Besides, you will also want to keep records about all doctors involved in your child’s care, specifics about treatment, such as dates of implementation, medications (including dosage and times of administration, as well as side effects experienced), appointments, unusual or important experiences relative to the lupus, and a list of questions to ask the doctor at subsequent appointments.
You can also ask your child to get involved with the daily record-keeping, as sometimes you will realize that your child is having some issues which you are not even aware of. Though you want to teach your child the importance of good self-care skills, you should stress the fact that lupus management should not be time-consuming.
Besides, you must be ready to relinquish control as your child begins to demonstrate the maturity to take over his/ her own care.
#9 Tips: Get Involvement From School Personnel
When your child is in the school, you will have to entrust your child’s care to teachers and other school personnel. Open communication with school personnel will help ensure that your child has a comfortable, safe and happy school experience.
It is very important for you to discuss your child’s lupus with his/ her teachers. There are certain aspects of this disease that are essential for a teacher to understand. It is important for teachers to know about the physiological impact of the disease and possible treatment-related tips.
It is also important to make sure that teachers are sensitive to the emotional needs of your child, so that they can monitor the situation in or outside the classroom with peers. It may be helpful if you can provide informational materials such as brochures or videos.
This is helpful for both the teacher’s peace of mind and to allow your child to attend school without being concerned about an insensitive teacher. Besides, it can also be helpful for teachers to be aware of any potential problems from other classmates, such as those who do not understand or who tease the child with lupus.
A child who has lupus should be able to participate in many normal school-related activities, with exceptions based on pain, sun sensitivity or other symptoms as they occur. When you talk with your child’s teacher, emphasize the idea that your child should not receive treatment.
Most children just want to “feel” normal as they do not want their peers to see them as being different. Although special considerations may be needed from time to time, this should be balanced with your desire for your child not to be singled out in a way that will cause problems within the school setting.
Although special considerations may be needed from time to time, this should be balanced with your desire for your child not to be singled out in a way that will cause problems within the school setting. Let teachers know what they should watch for and, if all is going well, that you want your child treated as normal member of the class.
Your child will be expected to complete his/ her own work and should be rewarded or disciplined like his/ her classmates as if lupus were not a factor. One very important thing to take note is the teacher should not allow your child to get away with behavior for which other students should be disciplined. Not only would this do a disservice to your child, but it might also foster peer conflicts.
Lastly, not to forget that your child should be encouraged to communicate with teachers as well. It can be very comforting for your child to know that his/ her teachers are supportive and understanding.
#10 Tips: Handle Sibling Rivalry Well
One of the most significant ways in which lupus in a child affects the family is in sibling relationships. Sibling rivalry is normal in any family, whether or not one child has a chronic illness. When one of your children has lupus, the other children in your family will be definitely be affected.
They may resent the extra attention that they feel is being lavished on the child with lupus, and begin to believe that their needs are secondary. This problem is certainly compounded if friends and relative fuss over the child with lupus.
Brothers and sisters may think that the whole illness is being blown out of proportion, that the child with lupus is making a big deal out of nothing, just to get some attention. There are many reasons that siblings may have difficulty with lupus in a brother and sister.
For example, they may be afraid that they are going to develop the same disease. Siblings need to be reassured that just because their brother or sister has lupus, it does not mean it is going to happen to them. You will want to make sure that they do not become obsessed with any symptoms they may experience, worrying that they might infected with lupus too.
Otherwise, siblings may feel guilty that they, in some way, caused their brother or sister to get lupus. Reassure healthy siblings that they did not say or do anything that led to the diagnosis of lupus in their brother and sister. This is especially true if there has been any sibling rivalry prior to the diagnosis.
So how can you keep sibling rivalry from breeding bad feelings among your children? Well, communication is definitely the main key. Siblings need to understand more about what is going on, they role they can play in helping the situation, their right to be able to express they way they feel, and that they are going to get plenty of attention.
Let siblings know that you understand why they might left out, and that you certainly do not intend to push them aside. Remind that they are as important as the child with lupus, and that you love all of your children equally. And also make sure they know that you will be available to listen if they feel their needs are not being met.
Do make sure you are spending quality time with each sibling. Even though it is realistic that sick children may occasionally require more time, it should always be possible to have time devoted specifically to healthy siblings.
Besides, it can be very helpful for healthy siblings to be included in some of the medical activities necessitated by lupus. For example, having them to go together with the sibling with lupus can be a bonding time. If sibling problems continue to exist despite your best efforts, it may be helpful to reach out to knowledgeable professionals for additional support, understanding and strategies to help siblings get through this difficult change.
Ultimately, you as a parent must accept the fact that lupus will not go away, but also must make sure that lupus management must not take over your family’s life. If your child is having a great deal of difficulty coping with lupus, perhaps you can consider engaging professional counseling services.