Last week I received a message in my Instagram DMs. It read:
"Hey!! I don't know if you want this advise or not so take it or leave it as you please...[insert unsolicited medical advice]... If you're interested I can get contact info from [redacted] for you. It's expensive, but you can never put a price on your life and living it comfortably 🤍"
The majority of the time messages like these have the purest intentions. People just want to compare experiences, express sympathy, feel helpful, or sometimes they just don’t know what else to say.
So, why is this a problem?
Chronic illness is CHRONIC! There is no magic herb or pill or meditation that will cure or resolve our symptoms. We can manage symptoms as best as we are able but most of us have been dealing with this for years and are likely stuck with them indefinitely.
We’ve probable already tried it. When you’re first diagnosed with a chronic or complicated condition, there is no stone you won’t unturn to make this go away. For most of us, it takes months or years to finally accept our diagnosis and that it’s not going away. Receiving messages like this in the middle of the acceptance phase, makes it even harder to come to terms with our diagnosis. Receiving messages after we’ve accepted our reality can just come off as condescending, ignorant... and honestly just annoying!
You’re not qualified. No HUMAN medical degree? No opinion. Point blank. Your Google search does not make you more of an expert than the person who is actively living with the condition.
Even if you were qualified, you are not our doctor. We tell people time and time again that we cannot give veterinary medical advice without an active VCPR (veterinary-client-patient relationship). So why would this be any different? Not to mention, your degree won’t matter at all if you’re not familiar with the disease or condition and don’t have experience diagnosing and managing it (especially with rare diseases).
Management isn’t one size fits all. No two patients are the same even if they have the same diagnosis. Some patients require multiple surgeries, while others do well with medical management. Some patients may thrive off lifestyle change alone, and others may require significant intervention.
What can you do instead?
LISTEN. Offer validation, not “solutions.” More often than not, we aren’t looking for someone to fix the situation, we just want someone to tell us it sucks, it’s not fair, and we are valid in our emotions.
Ask how they would best feel supported. Sometimes we want to want to vent and others we really need help getting through the day to day. We know you’re not a mind reader, so the best thing is just to ask.
Suggest fun activities as a distraction. On the days we have enough energy, we like to feel as normal as possible and forget about being sick! Be mindful of activities that will stimulate your spoonie friend without draining their batteries for tomorrow. How do you know what those might be? Just ask,“What’s something fun you might want to do today?!”
Offer practical help with tasks. There are some weeks where just staying on top of the day-to-day seems impossible. Even helping carry groceries up to their apartment, or washing some dishes can be the biggest help.
Spend quality time with them. Chronic illness and disability can be incredibly isolating. It often doesn’t take much to make us feel included and loved. Some of the most memorable times for me have been when a friend came over to keep me company while I folded laundry. The little things go a long way, even just continuing to invite us to things means the world (no matter how many times we have to decline).
So, if you’re thinking about sending some advice consider these questions first:
How well do I know this person?
Do I know their medical history?
What is compelling/motivating me to share this?
The most important thing to keep in mind is that every person is different. Some people want the world to know their situation is different and that they need to be handled with care. Others would like to fly under the radar as much as possible. It’s unfair and unrealistic to expect every patient to want the same treatment. So when in doubt: always ask, no matter how well you think you know the person!
If you find yourself on the receiving end of unsolicited medical advice, remember to first breathe… and proceed with a bit of grace. Here's how I ended up responding:
"Hi! I'm currently very satisfied with my medical care. The situation you described is not my current experience. My situation is a bit more complicated due to my complex personal medical history. I understand your good intentions here but if you are unsure if someone wants advice, it's probably best to ask first or just refrain from it entirely. It can be quite draining for people who are chronically ill/disabled to receive numerous messages from people offering unsolicited medical advice. I trust and am very grateful for my medical care team! Thank you for the thought though 🤍"
What do you think? How would you have responded?