When You Don’t Want Advice on Your Rare Disease

How many times have you had to sit and listen to someone give you advice on living with your rare disease?

Probably a lot!

From doctors to family members to friends to strangers, it seems like there's always someone with suggestions on how to make your life easier by improving your condition.

Advice can be unhelpful, even insulting

In some cases, such as when the advice is coming from medical professionals, it is appreciated and helpful. In many cases, though, especially when the advice is coming from people who don't know much about your condition or its symptoms, it is unhelpful and even downright insulting.

It can be difficult to handle these kinds of situations. On the one hand, usually the unhelpful rare disease advice is coming from a person who actually wants to try to help you in your medical struggles. However, when these people suggest simple fixes such as more exercise or diet changes, it feels like they minimize our experience with the disease.

Unwanted and uninformed advice can be harmful

For me, this has many negative effects. It brings me back to the many times when my experience with narcolepsy was invalidated, and I thought I was the problem. Like I wasn't trying hard enough (even though I was trying with all my might to make life work with my new condition). I hated myself for so long because of this attitude.

When my narcolepsy symptoms first started in college, it took me months to be able to get access to medications designed to decrease my symptoms. I found a bit of relief from these medications, but I was still barely functional as a human being.

Soon, people around me started making comments about my medications, insisting that they were what was causing my narcolepsy symptoms. Little did they know that these medications were the only thing keeping me from driving my car off the road due to narcolepsy sleep attacks!

YOU are the expert of you

Living with a rare disease is not for the faint of heart. Finding accurate information about diagnosis and treatment can be more challenging than it is for more commonly known diseases.

And it isn't always the case that people giving advice on your rare disease want to help – sometimes these people just want to be "right." Unfortunately, they do not know what kinds of treatments you've already tried. Frankly, they often have extremely limited knowledge of the symptoms you experience, their severity, or the source of the condition itself. How, then, could they ever truly help us?

Setting and maintaining my personal boundaries

I've since started implementing strong boundaries when it comes to my disability. I do not accept medical advice from laypeople, and I do not give medical advice to other people, either. I am not a medical professional, and I don't feel comfortable doing that.

However, I DO feel comfortable sharing what works for me if people ask! And I AM interested in hearing what works for other people while managing their rare disease! However, if someone contacts me with advice on treating my own rare disease, I will now explain straight away that I am not interested. This is my personal boundary, and I do my best to maintain it. It helps keep me sane. It does tend to rub people the wrong way, though.

But if I've learned anything from narcolepsy, it's that my time and energy are valuable. Therefore, I should never waste it on people who do not truly value or respect me.

Do you ever accept advice given about your rare disease? Do you ever reject advice given about your rare disease? Please share in the comments below!