When Doctors Don't Know the Answer

From the time you are little you are taught that when you are sick you go to the doctor and the doctor will know exactly what is wrong. For the typical healthy person that is often the case, but that isn’t always true for those who are chronically ill. Seven years ago when my health declined I remember being so caught off guard when doctor after doctor couldn’t tell me what was wrong with my body. The people who should have the answers, didn’t.

Fast forward 5 years and I received a diagnosis. For a while appointments were easier as I had a name to tell doctors. If he/she didn’t know the condition, he/she could look it up. Then symptoms progressed, things changed and I once again found myself sitting face to face with doctors telling me they didn't know what was going on. A familiar feeling returned. A feeling of “they are the experts, if they don’t know what’s wrong, how will I ever get better?” Its an uneasy feeling; one I hate. One I hoped to never face in this way again.

Its a terrifying place to be. It makes you obsessive over every detail of your medical record. You feel as though you need to put on this brave face and power through, while simultaneously wanting to just scream or cry or run away from it all. You’re asked to make decsions without knowing answers then are told its not the right decision. Its a feeling that you can’t fully explain until you have been there. As I find myself in this uncomfortable place I am reflecting on tips I learned the first time and advice I would give to healthcare providers, family, and friends for supporting someone through a period like this.

Tips for the Patient-

1. Be patient with yourself. Its ok if you feel uneasy. Its ok if you also just feel numb to it all. There isn’t a “correct” way to feel. Give yourself grace.

2. Be on top of your records, but set limits on time you spend reviewing and researching. Don’t allow yourself to become all consumed with trying to figure it out or find the missing piece. Chances are you aren’t going to find it and rather you are going to drive yourself crazy trying to figure it out.

3. Remember its frustrating for healthcare providers too. I think its important to remind yourself that your doctor is probably frustrated too that he/she can’t figure it out. He/she wants to be able to fix it too.

4. Find people who support you and are willing to just listen. You need people who you can process with and know that they won’t throw advice at you. Find those people.

5. Schedule in things that bring you joy. Your health will consume your time and you will have to make the decision to schedule in the things that bring you joy. You’ll need it.

Tips for Providers-

1. Follow up any statements of “I don’t know” with “But I am not giving up”. Patients obviously want answers, but more than anything they don’t want to feel alone when answers can’t be found.

2. Listen and believe your patient. Nothing is more frustrating when you are really sick than having a doctor who doesn’t listen to you and doesn’t believe you.

3. Don’t take his/her frustration personally. 99% of the time any frustration he/she has isn’t with you, its with the situation. You just happen to be the person who he/she can vent to about his/her frustration with his/her condition or even the medical system.

4. Don’t underestimate the power of simply being present. Sometimes your presence is some of the best medicine. I cannot tell you how much it has meant to me when a doctor has called during a hard week to check in, sent a message to let me know he/she was still working on figuring out answers, came and sat bedside in the ICU during scary symptoms even though there was nothing he could do, etc. I know you are busy, but remember sometimes even just 5 minutes of your time can mean a lot to your patient.

5. Don’t give up. Please never give up trying to figure out what’s wrong and finding solutions. There is nothing more disappointing as a patient than feeling like your doctor has given up. If you are truly done, help your patient find a new place to turn to.

For Family and Friends-

1. Be patient with him/her. He/she will probably not be themself in a lot of ways as there is so much going on. Please be patient with us.

2. Ask before offering advice. Those with chronic health issues don’t want health advice thrown at them all the time. Personally I love hearing things from people who have been through it, but I prefer when people ask me if he/she can tell me about his/her medical advice.

3. Listen. This goes along with # 2, most of the time those with chronic illness need someone to just listen to what he/she has been going through. He/she doesn't need advice. He/she just needs someone to listen.

4. Offer practical help. Offer to drive him/her to appointments. Offer to bring him/her food. Offer to help him/her sort through paperwork (chronic illness means lots of bills, insurance papers, etc). Don’t just ask “how can I help” instead say “I’d love to help you. Is there a specific way I could help you? I am willing to drive you to appointments or I am running to the store. Is there anything you need?”. A general “How can I help?” can be daunting.

5. Remember him/her . Send him/her a text. Call him/her . Send him/her snail mail. He/She might withdraw from being social, that doesn’t mean he/she doesn't want to hear from you, it just means his/her brain is occupied with all his/her health stuff and that might mean he/she hasn’t remembered to reach out.

Disclaimer-

All information provided on this blog is for educational purposes only. Always consult your healthcare provider and/or your insurance provider for your specific situation. This blog does not offer medical advice.