The Aword

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Support Groups

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These can be invaluable in helping you to come to terms with your condition; frequently, contact with other sufferers is helpful with regard to learning about the condition and about ways in which other people have been successful in managing the problems that arise.

Apart from anything else, this contact reduces the terrible sense of isolation that arachnoiditis, (as most chronic conditions) can cause. Issues that you feel unable to discuss with your family or even friends, especially those issues that may be regarded as "unmentionable" can be explored in the safety of the support group.

This is especially true of online support groups accessed via e-mails; the anonymity of which permits free and frank discussion of some highly personal matters.

The potential downside of support groups is provision of information that may be construed (by the medical profession) as alarmist or lacking in clinical perspective and accuracy.

Also, the iatrogenic (caused by medical treatment) nature of the condition may lead to too great an emphasis being placed on apportioning blame and encouraging a loss of faith in the medical profession.

Whilst a degree of approbation concerning the ill effects of previous medical treatment is entirely understandable, it is vital to steer clear of vitriol and hyperbole.

Support groups must strive towards a positive outlook and they should attempt to ensure that information they impart is balanced and accurate as far as possible.

It may be useful for the support group to label itself as a group of "survivors" rather than "sufferers" as this has a more positive connotation. 

A support group for the carers might also be a very helpful organisation: the pressures of daily life can be immense, as can the psychological distress that the carer may not feel able to share with you, the patient (nor do they feel sharing their concerns, whether about the illness or indeed, about the other problems in their life, is justified).