Through the trial and after, you may find that certain relationships have deepened, and others have shifted. If you have been part of a disease community, you may encounter support from other members; you may also find that some members are disappointed, angry and/or jealous that your child has been included and theirs has not. While you are still part of your disease community, you may experience feelings of survivor’s guilt, which is a guilty response to a situation where one person has survived a loss (in this case, a child is able to participate in the trial) that another has not (because another child has been excluded from the opportunity).

Many clinical trials include restrictions on sharing experiences during participation in a trial. In this case it may be difficult to face other families that are curious or anxious for information, and so it is common for families participating in clinical trials to begin to isolate themselves. These experiences are a natural by-product of the clinical trial experience, and they deserve to be acknowledged and addressed. Your disease group’s Director of Family Services role can be a source of support.