An Open Letter to Family and Friends


This letter was originally published on Robin's wonderful personal blog

This is an open letter to our friends (fair-weather perhaps) and our family that don’t understand (be honest, some of you don’t even try). This is not to upset anyone, or make you feel guilty, we just want to share our heart with you, in hopes of gaining greater understanding and support.

We understand that your life is busy, ours used to be too. It can be very difficult knowing what to say or what to do when your friend or family members health situation is chronic and not going away. Don’t get tripped up on that though, we still want you in our lives. We need you to keep us in the loop of your life, it really helps us when we can focus on others.

So, what would really bless us you might ask? Simple things. Spend 30 minutes with us over a cup of coffee or tea. Call us once a week just to catch up on each other’s lives. Send us a card or a book you think we might enjoy. Pray for us. Bring a meal or fresh baked cookies. Simple things.

Please don’t forget about us and drop out of our life. It makes a complicated situation more painful and lonely. It’s so hard feeling socially isolated! When you invite us somewhere or include us in your plans, we may have to cancel at the last minute. Don’t take it personally, it just may mean our energy or pain levels won’t allow us to follow through. Just like we wouldn’t take it personally if you had to bow out because you had the flu or a migraine headache.

Ask us for a good book or website that you can read to better understand our condition. We had to do that ourselves in order to better understand our illness. We are happy to answer ANY questions you might have.

Be willing to be flexible when you come to visit. We may be on the couch or in bed, but we will still enjoy your company. Because of my tailbone issue and the unrelenting fatigue, I spend most of my time laying down. I just bring chairs into my bedroom for my guests. Even though having company exhausts me for several hours afterwards, it is so worth it!

Show a genuine interest. Ask about our day and what we do to cope with our symptoms. Be positive in your comments or questions. Ask us how you can support us. Let us know you’re available if we ever need to talk, that is such a precious gift to give. For those of us with young children, offer to take them for a few hours so we can nap, or just rest.

YOU are a very important part of our journey, and we truly desire to maintain those relationships that are so important to us.

In spite of my illness,


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Robin's Instagram: @robindix

Holly Gouldthorpe