This week, I have seen a friend struggle with illness in her family – but, mostly struggling with all the “well meaning” in their lives that don’t really turn out to be that helpful to a family dealing with illness. And, it occurred to me that, in all my years of this blog, I do not think I have written an article specifically addressed to the friends and families of people dealing with the illness of Scoliosis. Because Scoliosis is so complex, there are many different paths that families can take in their journey. I know from experience that the research and advice from “experts” can become overwhelming and I always advise parents and patients to research all the options themselves and then come up with a plan to present to their medical team. It’s very difficult to formulate this plan, however, when you have hoards of well meaning friends and family giving you their unsolicited opinion. A wise person once said to me: “What is the difference between advice and control? Advice is solicited.” It is very true that anyone who gives unsolicited advice is really out to control your decisions through influencing you with their own. And, it can make a person dealing with illness feel very torn and in a “no win” situation. The focus of any treatment plan should be solely in the best interest of the patient – but, it can be hard to put that priority first when you have many different unsolicited opinions flying your way. I mean this all with respect – I KNOW that people gave me “advice” and suggestions from a place of love and truly wanting to help, but the reality is that, if it is unsolicited, it doesn’t really help.
Rule #1: Don’t provide advice unless it is asked for. A correct response is usually, “I am so sorry to hear that you are dealing with that. Please let me know what I can do to help.” If you want them to know you have knowledge on the subject, you could also add: “Also, I have been doing reading and research on this particular illness and I am happy to share with you my findings, if you would like. But, there is no pressure. I am here to help and won’t be offended if you do not want me to share my findings.” Even I, who some parents consider a “lay expert” of sorts, ask parents – “Do you want to know what I would do?”. Sometimes a family just needs to vent. They may JUST WANT YOU TO LISTEN. So, listen, ask them “Do you need to vent here or is there something more I can do to help you?”. And, ACCEPT THEIR ANSWER. They will know they can come to you if they need you. Sometimes Scoliosis parents say to me, “I know you won’t agree with this, but…”, to which I always listen, tell them that I respect their decisions and I MEAN IT. People don’t have to agree with me for me to support them. And, I never dish out the “I told you so’s” later, if there are any. What good does that do? There are many ways to walk the path of an illness and, barring any very dangerous or negligent behavior, other people’s decisions are really none of my business. Additionally, be sensitive to passive aggressive social media posts – general “fyi” sharings that are not technically targeted at the person dealing with illness, but that could provoke fear, anger, or just a general feeling of discomfort in them. Remember the goal: providing support to your loved one. Sometimes to do this properly, you have to support them while they do something you don’t necessarily agree with and just keep you opinions literally to yourself.
Rule #2: After telling a family that you are there to help in whatever way they need, come up with a way to help them anyway. Many people will downplay their need for help (I know I did). Simple suggestions: mail them a card with $10 or so for a meal. Especially for families spending a lot of time in medical facilities, every meal helps. Or, send a gas card for a gas station you know they frequent – I know we spent many, many hours on the road to go get treatment. Every little bit helps. Offer to help drive other children to events, or invite them over for some fun activities. The siblings of patients can feel everything gets very “doom and gloom” at home. Parents are taxed trying to figure out how to “take care of business”, while balancing fun in the household. So, any little gesture helps. And, the list goes on – there are just so many ways to support a family dealing with illness, while keeping the time demands on the family to a minimum. Don’t wait for them to take you up on your offer of help – just do something for them anyway.
Rule #3: Do not ignore Rule #1. 🙂