Community Views: The Most Annoying Unsolicited Advice

If you have ever expressed your feelings or concerns to a loved one about your rare disease, they may have responded with advice – and it is not always helpful. They may suggest lifestyle changes, recommend home remedies, or offer up some old wives’ tale that has been passed down through generations.

There is no way for someone who does not live with your condition to fully understand the experience that you are going through. So while they may have good intentions, their advice can often be uninformed and even hurtful.

What is the worst unsolicited advice you have been given about your rare disease?

To learn more about the kind of advice people with rare diseases receive, we reached out to the RareDisease.net Facebook page. We asked, “What is the worst unsolicited advice you have been given about your rare disease?”

Ranging from the dismissive to the ridiculous, here are some of the responses.

'Get some exercise'

Several respondents have been advised to exercise or be more physically active. Being physically active can provide you with plenty of health benefits, like improving your mental health and overall well-being. But it is unlikely to be the end-all treatment for your rare disease.¹

Also, this piece of advice does not acknowledge the fact that some health conditions can cause chronic pain or physical limitations that make it difficult to exercise.

“Someone said to me ‘If you exercise more, you could breathe better.’ Both of my lungs are shot and I’m on 6 liters of air, but they recommended that I should exercise more.”

“I was told ‘If you would just get up and do something, you would feel better.’”

'Change your diet'

For some health conditions, dietary changes may be a part of the treatment plan. However, this is not the case for every person. Many respondents shared that people in their life recommended they try a new diet plan. One even said they recommended they eat only grapes and nothing else!

First, your diet should consist of a variety of foods – not just grapes. Second, this type of advice fails to recognize that rare diseases cannot be cured with dietary changes alone.

“‘Have you tried drinking lots of juice?’ My sister swears by this. Keep in mind – I need a double lung transplant.”

“‘Have you tried eating organic?’”

It’s all in your head

Unfortunately, if there are no visible signs of your health condition – like using a cane or having a rash – there may be people in your life who doubt you and question your experience.

This type of feedback can be hurtful and damaging, especially if you start to believe that it really is all in your head. No matter what people say, always remember that your health condition is real and valid.

“I was told ‘No one can be this sick, you must be making it up.’”

“Someone said, ‘You don’t look sick. You need to get outside and get fresh air.’”

Our community is here for you

Even though receiving this advice may have been unpleasant or uncomfortable, we are grateful that you shared your stories with us. Thank you for being a part of the RareDisease.net community and for sharing your experiences. We welcome your stories and invite you to explore our forums and connect with others.