Rare Disease Support

Sometimes people don’t know what to say to me.  And that’s okay.  If the  roles were reversed I think I would feel the same.  But there must be some information out there that helps you know what to say when your friend or loved one is going through a hard time because their child has a disease, illness or disorder.  I found this advice here, written by Betsey Kirkemo, and I’d love to hear your feedback or other suggestions.

1. Resist all temptations to utter clichés. While well meaning and often true, these off-the-cuff statements often contain messages that the parent is unable to comprehend, and it comes across as dismissive, uncaring and condescending. Imagine how she might feel upon hearing, “God only gives us what we can handle” or “You should feel blessed that God chose you to be the parent” or “It is what it is”. While clichés are often true, they are unwelcome and not compatible with allowing someone to grieve.

2. Offer to cry with them. The most isolating experience I’ve ever felt was being unable to express my grieving with friends who were unwilling to allow me to express my emotions. Grieving is natural and completely warranted, and what we need the most to process and work through how we feel so we can become good advocates. Grieving? You may think that grieving is isolated to death or divorce, but it’s a process we parents of special needs children understand and must endure over a lifetime.

We grieve the fact that our kids will never be able to grow up typically… to graduate high school… to attend college… to leave home and be able to support themselves… to make qualified decisions on their own… to marry and have children. The lessons are never far behind us, and if we become too complacent, another challenge rears its ugly head and forces us to continue mastering the lesson of grieving once again.

3. Interact with our child the way you would interact with your own child’s friends. Our child perceives and learns differently, but what we want most for him or her is to be treated like any other child.

4. Avoid telling them how you think they should feel. Chances are they won’t appreciate hearing “You shouldn’t feel that way…” Feelings just are, and like snapshots, they only reflect the moment the picture was taken. It doesn’t mean they feel that way ALL of the time. Validate the feeling and know that they will return the favor some day.

5. Learn how to be a compassionate and sympathetic listener. This is true for all of our friendships, and it’s what builds intimacy and commonality. It doesn’t require you to fix or to offer solutions-just listen and offer support.

6. Don’t avoid sharing your own stories with them. We love being friends too, and we relish your own family’s accomplishments. It bridges the gap between support and isolation.

7. Don’t dismiss their worries as crazy or negative thinking. When my ex-husband and I began the tedious chore of establishing a special needs trust for our daughter, a few friends were horrified to hear of the intricate details we were discussing. Part of our estate planning assumes that our daughter will not be able to make decisions for herself, so we had to account for every possible scenario if we were to die. We were told that we were excessively morbid and accused of not thinking positively, when the simple truth was we were being realistic and wise.