Until this week, I forgot what that first 6 months felt like until my daughter came to me to say she had been diagnosed with a rare condition that will also change her life. She and I talked about what she was feeling, how scared she was, and how little people know about this. I started to remember those months...having to tell people what I had, answering a million questions about it, feeling like a broken record, and just wanting to be supported without constantly explaining the bad parts of my condition.
So this blog post is being written to:
- Help people understand what people need and don't need in the first few months of a difficult diagnosis.
When someone tells you, "I was diagnosed with ______."
Please, please, please:
- Remember that this is shocking as hell for her! Her life has changed forever and she is trying to come to grips with what she is being faced with. You may have questions, but she may not be able to handle answering them....I cannot stress this enough!
- When she wants to talk about the condition, she will open that door. If she doesn't, then be supportive of her, keep conversations light, make her smile, and tell her how beautiful she is...because she truly is.
- If she doesn't feel strong today, THAT'S OKAY!!! She should be allowed to break, crack, cry, be scared, be confused... and she needs someone strong to stand by her side when she isn't.
- Don't be sad for her, around her. She will fight this, she will make it through, and she will be stronger for having faced it. Be happy that she is going to do all those things and support her doing them.
Right now isn't the time for 20 questions or being sad...its time to be strong for them and support them how THEY need to be supported.
