By Elizabeth Baid
When a child or adolescent is first diagnosed as having R.P. it is usually a terrible shock to all concerned. This is true even if the family have had their secret suspicions for ages, or if the condition is already present in another member of the family. We all know that the handling of the initial diagnosis is vitally important to the future well-being of the whole family. I am afraid that still, all too often people are dissatisfied with what and how they are told the news. In many cases the R.P. Society can and does help pick up the pieces.
Each member of a family where R.P. has been diagnosed is bound to feel many different emotions. In fact I think it is essential for full acceptance of the condition that they do. By no means everyone in this situation will go through the same pattern of feelings or will feel them to the same degree. However, I would suggest that most families feel many of the emotions I am now going to explore to some extent.
I would now like to explore some common emotions that might be experienced. Knowledge and under- standing of these and other emotions may help individual branch members to help those about them who are in need.
Usually when a young person has been diagnosed, the first point of contact with the Society will be through the parents or another adult. It is vital for us to remember that the person with R.P. needs a lot of help and support, (as do all who surround him) if the whole family is to work towards full acceptance of the disability.
Some of the emotions parents may feel on their child being diagnosed as having R.P. are as follows. The intensity and pattern may vary with circumstances, whether or not there is already R.P. in the family and what position the child holds in the family. For example it may be more difficult to put things into perspective if the affected child is the first of a family.
Some degree of guilt is I think inevitable. This feeling may never entirely go away. However, by being acknowledged as an acceptable feeling it will be lessened and for most it will fade well into the background. The parent who directly passes on R.P. may feel more guilt. This is true even if the decision to have children was taken with knowledge of genetics and of the risks involved.
Other feelings in these parents however may be as strong. There is often a feeling of severe panic, "What can we do". This is often followed by an overwhelming sense of helplessness. Some may find it easier to cope by totally (or in part) denying that they and their child have any real problems. It is sometimes easier to gloss things over with friends and neighbours than lift the lid of the tangled emotions which many people may not want to hear about.
When these parents then acknowledge the problems some frantically are out to seek a "cure" at all costs. If (as at present) they are unsuccessful they may be plunged into deep depression which it is hard to leave.
For all those in this situation I think there must be some degree of grief. A part of their child is failing and may one day go forever. It is after all a very sad thing. To grieve for a loss, whatever has been lost, is natural and I think people should be encouraged to express and not hide their feelings. We are all proud of our children's achievements. Sometimes after diagnosis of R.P. these may be limited or at least parents may think they will be. Consequently they may feel some loss of status among their own contemporaries. Many find it hard to be singled out. The disability in the child brings out all sorts of emotions in those who surround the family. In many cases the emphasis is a change in acquaintances. Most parents I know also feel a great sense of isolation, especially at first. This is a frightening feeling and is one way in which the R.P. SOCIETY is already helping by its sheer existence until the height of their emotions is passed.
Three more emotions many face are fear, frustration and anger. These are closely related and may follow in quick succession. Fear for the future of the child and fear that he will not be able to handle things is very real. This may lead to frustration "are we doing things right" which is aggravated by the whole uncertainty of the disease, its pattern and prognosis. Frustration in its turn can easily lead to anger; anger with oneseif and anger with the R.P. sufferer. Sometimes it is directed against the professionals or just anyone who gets in the way. I think being able to express this anger is probably the quickest way to successful adjustment. The phrase "why did it happen to us" must be familiar to most people in this situation.
Finally, a state which is very damaging to all and very difficult to anyone to be helped out of is that of apathy. "I cannot do anything, so why should I try"?
There are I am sure some people who never emerge from this state, much to the detriment of themselves and all around them.
Most families in this situation whom I have come across complained bitterly of the great lack of good sound information about the condition and its prognosis. Ignorance is very frustrating. You may know you need some kind of help but do not know where to find it. Not only does the disease itself have so many different forms but the help available in different parts of the country is as varied.
lf a child's sight deteriorates rapidly parents may have to face making very important practical decisions for the future, whilst still in a state of shock. Time is valuable to the young and time lost in schooling is hard to make up, especially with a disability. So if these parents have as much information as there is and informed support to help them, the future for the child is brighter.
Sometimes too the media can add to stress. There is much talk of ”cure” and ”the 4iind regaining their sight” and sometimes people may feel they need to justify to others apparently doing nothing. Also there is much spoken about integration in many areas, especially education. If this is not suitable for your child you should not feel under pressure. To be able to make the right decision for your child is what is important.
The sheer number of professionals that might be involved with a family at such time is in itself confusing, especially if they do not appear to work together. This is just one more thing for parents, already under stress to sort out.
The siblings of a young person with R.P. are also affected, and in some cases get (or feel as though they are) somewhat left out. A great deal of help may be directed at the R.P. sufferer and also maybe to his or her parents but the siblings are ”alright”, so may get ignored. They may have many questions which are very hard to voice, ”will it happen to me”? ”should I marry”? or might it happen to my children? They also have many good contributions to make as they know the affected person so well. Life is hard for all growing up and siblings may feel extreme anger with the R.P. sufferer for making life even more complicated. If they express their feelings they could be accused of selfishness.
Many of the emotions I have spoken about in relation to parents may affect siblings to some extent. Even if both the young person with R.P. and their parents adapt well to the situation, if the siblings do not, the family can be set for emotional disaster.
When a child is diagnosed as having R.P. he or she may not be present in the room. There is often a deep wish to protect, not only the child but all from the true implications of such a finding and to delay telling him or her seems the kind and easy way at the time. Doctors too often feel uncomfortable with children. I think that if a child is not told the truth from the beginning it is much harder for anyone to tell him or her later. In addition, he or she may find out elsewhere (and indeed not accurately) what is wrong and this could be disastrous. Also he or she may worry even more than necessary if he or she feels that there is a family secret about it. Children are sensitive to atmosphere and are bound, however young, to sense that something is wrong. I do not think that any child is too young to have questions simply and honestly answered. This can be extremely hard at the time but I argue that it will help the whole family in the future. Most children do not ask questions if they cannot cope with the answers.
Indeed if they are told too much they just do not hear, or the information is stored somewhere in the memory until it becomes relevant. I definitely think that at any age knowledge is better than the lack of it.
A child with a disability always evokes great public sympathy. He or she is often the object of too much help and curiosity. He or she is now identifiable, which no child likes. He or she may find other peoples reaction to him or her harder to cope with than the problem itself. Before being diagnosed, the child with R.P. may have been thought a clumsy child or even stupid so there may be an adjustment of role to make. He may prefer the old role to that of blind or partially sighted and thus in whole or in part deny the true problem.
Other children may use a sight problem as an excuse for bad behaviour or failing to do something. It is a convenient peg on which to hand many sins. It may be seen by other people too as an excuse for difficult behaviour. I fully accept that poor sight leads to frustration, etc. and in the child this must come out. However I think it is useful to the child for him to talk and try to understand honestly why he feels this way and not just hide behind it or deny it. He cannot be always protected, so the sooner he can understand himself and the problem the better for all.
Adolescence can be fun but is very hard work even for those with no obvious problem. For someone with R.P. it can be traumatic. Adolescence is about learning to live with bodily and emotional changes and generally a time of seeking one’s own identity and of trying to make some sense for the future. If we stop and think for a moment one of the main ways we all learn how to behave in adolescence is copied. Fashion is an obvious example. None of us like to be told what to do or learn secondhand from others, but those with sight problems have to do this a great deal. The way we use our bodies and dress gives out many signals. At no time is this stronger than in adolescence, as it can be a way into relationships and a prop in many circumstances. If you cannot see, not only have these messages to be picked up in other ways, but you do not always know what sort of messages you yourself wish to put out as you may be unaware of the current alternatives. It is hard always asking advice on such a subject. Parents are notoriously anti most modern fashions and will often give biased advice like a blanket ”it doesn’t look nice dear”, Friends may not have the confidence to say if things really do not match or suit.
Rebellion in some form is a normal part of growing up into a responsible adult in ones own right. For someone with a sight problem it is perhaps hard to rebel by dressing outrageously as you may not know what they would mean. It is one area of legitimate protest entirely or partially blocked. Most of us learn about what suits us and what we like etc. in the end, but it takes courage and effort and indeed some may give up and not bother about that particular visual aspect of life.
We all know that the adolescent is especially explosive. Those with R.P. are even more frustrated, with tensions building up and of course it is hard to flounce out, in temper, if you are likely to fall over the step, It is also hard to protest by staying out late at night if you suffer from night blindness. Explosiveness is a safety valve. Tempers are necessary to healthy development. If they are totally suppressed by practical limitations anger may fester and turn inward to depression.
All of us with a sight problem are slightly more dependent on our friends and families than our sighted friends. We are more careful, perhaps, not to upset people even when provoked ”we should not bite the hand that feeds us”. It is often said that people with a disability, especially the blind are ”so happy”. I wonder if this may be a necessary mask as emotions may be so strong. If so it could well be storing up trouble for the future - it is much harder to rebel in your 30's.
I have already spoken of many emotions that may affect a family with R.P. and of course all of these may affect the adolescent too. But on account of his age he is likely to feel them all and then more acutely. Anger and depression are two emotions which are most common. Confusion too plays a large part with the adolescent R.P. sufferer. You cannot just go and look something up that you feel is too silly to ask anyone. Anyway by asking the question you acknowledge to yourself and to others that you have a problem. This, as I have said, is hard to do and certainly for most people the ability to do so does not all happen at once. There is a fierce independent streak in most adolescents which is a great help in overcoming many things. It is, however a particularly hard age in which to accept help gracefully and it is hard on those around the young person to let him or her have full independence, especially if there are risks involved - over protection is tempting but can be disastrous.
Adolescents spend much time talking and apparently just sitting around and this is very important as it is the main way they learn to find themselves and where they may fit in. For someone with a sight loss it can help to release many feelings that, as we have seen, do not always have other outlets. The adolescent must find interest and understanding otherwise he or she will not trust enough to talk. It is not always right to accept that an adolescent says that he or she is fine. The person could be fine but unable to talk at that time so it is essential to keep avenues open for him to return to when he is ready. The young can often be arrogant and put people off from offering help. Unless people understand why the adolescent appears rude and ungrateful he will not be offered help again and all will be losers.
One further aspect of life for the adolescent with R.P. is acceptance by his contemporaries. If the adolescent has quickly come to terms with his disability he is bound to find it easier to keep his old friends and to make new ones. It is easy to be suspicious of new friends, ”why are they willing to be friends with me”?. This is felt more strongly by adolescents as they are often lacking confidence. It is however a feeling that often does not go away and crops up from time to time when we are low and vulnerable. Fear of the unknown and fear of not being normal are very real for many adolescents, even those who do not have an obvious problem. They are also isolating emotions as they are always hard to talk about. A sense of loneliness may be ever present in young people.
Most of my observations here are personal ones, both from having had R.P. diagnosed as a child (although it only began to intrude in adolescence) and having worked with the disabled. I have also recently contacted some parents and a couple of adolescents with R.P. to discuss the subject. Most of those I spoke to experienced most of what I have spoken about in some way and their practical cries for help were all the same. All asked for more accessible information, which they got on joining the R.P. Society but they wanted it before. Also all wished to talk to more people who understood the condition, either alone or in groups.
I have by no means exhausted the list of feelings that young people with R.P. can experience. Many of them, branches of the R.P. Society and helpers generally can do little or nothing about, in a practical sense. Perhaps one of the main ways of helping is to have a little understanding of the emotional process that may be involved. It is important to have understanding of the anger and rejection that may be met by a helper and thus not to be put oft by people’s exterior and maybe apparent lack of interest. In itself this does not make things right but it can often help people at many stages of distress. For someone with a degree of first hand knowledge and understanding to be available to listen with the door open, as it were, is very important. Maybe branches could help by having amongst their numbers, a welfare volunteer, who could make it their business to welcome new members and always try to find someone for people to talk with if required, who might have a similar experience. Many branches are large, so much work of this nature would need to be carried out on the telephone. The telephone is a useful tool. Maybe we could all look at our general skill in its use. When dealing with distress it is so easy to put people off and you only have your voice with which to gain and keep their trust. If members do not gain confidence in the society they may never benefit from it or give to it. So there is great importance in the initial contact,
By its sheer existence the R.P. Society, both nationally and through its branches helps both by reducing isolation and by information sharing. These areas are vital and we must never become complacent about them. Many areas hold social activities already. Maybe we could look at events which would attract the young person and his or her family. Even if they are interested it may be hard if not impossible for them to come. Maybe we should reach out more to those who seem reluctant, to give them a real lasting opportunity to both receive and contribute to the R.P. Society in their own way. It is however very difficult to keep reaching out, almost as an act of faith, especially if you feel you are getting no response. This is, however, what many people need, maybe especially the young. Helpers may never know what their steady reaching out has achieved. Maybe if you are lucky, in years to come someone might say ”without your persistence in reaching out to me in my distress I would never have emerged from depression and done .."
Elizabeth Baid.
R.P. IRELAND – FIGHTING BLINDNESS
The Irish Society was founded in February 1983 by Republic of Ireland members of the British Society. Members of the Irish Society have dual membership of both the Irish and British Societies. The Irish Society will be formally affiliated with the British Society and will maintain close links with it.
Statistically it is estimated that there may be between 2,500/3,000 people in the Republic suffering from R,P. R,P. is the most common form of blindness in the working population. Prior to 1971 when the American Foundation was set up little or no research had been done into the disease. Substantial funds have been poured into research in the U.S., U.K., Canada and elsewhere since then. There are now large R.P. Organisations in many countries throughout the world. Great progress is being made in the field of research into R.P, There is great hope that with the energy now being put into fighting the disease a solution will be found in the not too distant future.
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