My time on social media has allowed me to get to know a number of people who have health concerns similar to mine. We get to chat occasionally and support one another. One thing that seems to be universal to all of us, regardless of our chronic illness or disability is that others knowing we are struggling with health problems seems to bring about a great deal of unsolicited advice.
Last year, I shared that my new doctor had given me a diet plan to follow, something I’d been begging my previous doctor to do for nearly 15 years. I shared it with the family and decided to start out by adding two or three meals from the diet to our weekly menus. We loved the meals I’d chosen to add and I posted on Facebook that we were enjoying the diet and so happy that we finally had something to work from.
It didn’t take one day before a recently added friend began to lecture me about how the diet she follows is so much better for people than anything the doctor would have given me. She started to preach to me that low fat diets are unhealthy and don’t work. She follows the paleo diet which is, according to her, better for people with compromised immune systems. She referred to my doctor with derogatory names and attacked specific elements of the diet plan.
I was terribly discouraged. I had been so elated to have finally been heard and to have had my request taken seriously and been offered help. I went into a depression and was so disheartened I gave up the diet plan.
People think they are helping, by offering unsolicited advice, not understanding that they don’t know the nuances of each person’s specific illness or disorder, or how it affects them. They don’t understand the medications the person might be on or what’s been tried in the past. They don’t know if a person’s treatment requires certain things from their diet. They simply don’t understand. They don’t understand that they can do terrible harm by assuming they know what’s best for someone else, based on what they happen to be doing for themselves at the time.
Out of fairness, I researched the paleo diet and found a lot of information debunking it. Just as one can do with any other ‘fad’ diet.
Another of my friends who has similar symptoms and chronic pain as I do shared with me how frustrating it is when people around her make suggestions for treatment or strongly disagree with her treatment, questioning her medication, physician’s recommendations, the way she copes with her circumstances. This friend was so flustered by a family member’s questioning and condemning of the amount of medication she was taking, she stopped taking her medication to see if she could cope with less, consumed with doubt, that perhaps her family member was right, and ultimately suffered terribly, for days. It took time and considerable pain before she got her medication levels back up so her pain was tolerable. She suffered unnecessarily because someone who had no idea what they were talking about decided to give unsolicited medical advice.
Recently, a friend’s daughter got a serious diagnosis regarding gastrointestinal problems she’d been suffering with. She was thrilled to finally have a name for her daughter’s condition, because having identified it meant they could begin to make adjustments to her diet, lifestyle and medication to hopefully bring her some relief. The disorder requires a very strict diet, particularly while they are trying to control and regulate her pain and digestion time.
The same person who slammed my doctor and pushed me toward the diet she follows posted her diet for my friend. Thankfully, another friend responded that with this illness one has to follow the prescribed diet plan, without deviations, while they are trying to regulate the individual’s digestive times.
She was obviously upset, as she posted a very passive-aggressive response about upsetting everyone. I haven’t seen her comment since then.
I understand that people are well-meaning and think they are helping by offering suggestions based on what they believe to have worked or be working for them, but they simply have to understand that they do not have medical degrees, they can’t possibly understand every disorder and illness that others are living with. They have no way of comprehending what methods and treatments have been tried and what has been abandoned or rejected because of ineffectiveness or unwanted side effects.
They can do terrible harm.
If you want to help someone who is suffering with chronic illness, pain or a disability, allow them to vent, to talk about their experiences. Just listen. Most of us just want to be heard, to know someone cares, to have family and friends try to understand what it is we’re dealing with.
Please, try to understand that without adequate information, you can do irreparable harm to someone.