Discussing Your Undiagnosed Illness: How Your Loved Ones Can be Loving, Helpful, and Supportive

Living with an undiagnosed disease is immensely difficult. It is an endless journey of hopelessness, confusion, questioning, abandonment, and destitution. It is physically, emotionally, and financially draining. In a living death that drags on for years, all you can do is watch your life spiral out of control. Your body is failing you, and your doctors don’t understand why. Your friends and family, however, seem to have plenty of answers. While they may be trying to help, their comments only come across as minimizing, insensitive, and judgmental. Fortunately, there are ways to discuss your undiagnosed illness without destroying relationships. Following are a number of statements that your loved ones should avoid as well as effective alternatives that can foster a supportive conversation about your health.

1. “You should try getting more exercise.”

While exercise is generally a good thing, I don’t need judgmental lifestyle advice. I need medical advice from a medical professional. I’m battling a demon far greater than you could ever imagine. It’s not about exercise. It’s about a legitimate medical condition that requires complex medical care. To suggest otherwise is minimizing and hurtful.

Instead, say: “What can I help you with around the house?”

2. “You just need to eat a better diet.”

Eating healthy is great. At the same time, dietary advice is incredibly presumptuous. Despite what you may think, I don’t live on steady diet of fast food and candy. I eat just like anyone else. I’m struggling just to tolerate life each and every day. My body is malfunctioning, and it’s not my fault. I don’t need simple lifestyle advice. I need a diagnosis. I’ve been through enough. Don’t make it worse.

 

Instead, say: “Would you like to see some of my recipes?”

 

3. “It would help if you stop sleeping so much.”

I sleep because I need it.You may not need a lot of sleep, but I do. My body is tired, even if you don’t think it should be. I’m battling constant sickness, and it’s exhausting. Extra sleep is not a luxury, it’s a necessity. And yes, I’ve tried sleeping “your way,” and it makes me feel worse. Please don’t give me your unsolicited lifestyle advice. I don’t need it, and it will never be helpful.

Instead, say: “I’m so sorry you’re not feeling well. Enjoy your nap, and let me know if you need anything.”

4. “If you were really that sick, you’d be in the hospital!”

This is not true. Hospitals are there to stabilize their patients. I’m stable, but I’m still very sick. And I often do end up in the hospital. Like some of the the other statements, its an attempt to minimize the issue and spit upon the undiagnosed experience. You should avoid it completely.

Instead, say: “How are you feeling today? Is there anything I can do to help?”

5. “You just need to get out more.”

This could not be further from the truth. Going out often makes me feel worse. Getting out of bed often makes me feel worse. Showering often makes me feel worse, as does standing up, eating, and just existing in general. If it consistently makes me feel worse, why would I do so more often? I follow the advice of trusted physicians, not ill-advised stabs in the dark from everyone else.

Instead, say: “I’m going to the store later. Do you need anything while I’m there?”

6. “It’s all in your head.”

Just because my symptoms don’t fit your narrow definition of disease, doesn’t mean the disease doesn’t exist. You don’t know what’s wrong with me, and that’s okay. But don’t invalidate my heartbreak. Don’t desecrate what I’ve endured. My disease is very real, even if you don’t understand it. I’ve lost a lot because of this disease. Don’t make me lose your support, too.

Instead, say: “I want to learn more about your health. What can you teach me?”

7. “It’s just depression, anxiety, or a psychosomatic illness.”

I have to sit back and watch helplessly as my health declines. That saddens me. But my diagnosis is not a mental illness. I have thrown myself into many endless hours of research. I have spent thousands of dollars  on medical care. I have devoted every spare resource to finding answers. Let me assure you that it’s not “just” depression. Mental illness is devastating for everyone involved, but that’s not the issue, here. Do not attempt to diagnose me. It’s insulting.

 

Instead, say: “Have you found anything promising in your research lately?”

8. “I know someone who used essential oils, and now she’s cured!”

I’m not trying to reject your attempts to help. But I need to stick with proven medical treatments, not some lotion or supplement you saw on TV. And what works for one will not always work for someone else. I’m done with home remedies, health fads, and the basics. I need in-depth, targeted medical care.

Instead, say: “Can you tell me more about the treatments you’re using?”

9. “You just need to drink more water.”

If I’m thirsty, I’ll drink a glass of water. And I am okay with that. Beyond that, though, I’m not interested. I am not dehydrated. I am legitimately ill. I could drink all the water in the world, and I still wouldn’t be any better. I am not this sick because of something that simple. I did not cause my disease. My broken body did.

Instead, say: “I’m sorry you’re having a tough time. What can I do to help?”

10. “It’s mind over matter!”

You think I’m too weak, but I’m stronger than you know. It takes strength to get out of bed each day. It takes strength to keep searching for answers, even when no one else will look for them. It takes strength to keep going, even when I’m losing hope. It takes strength to carry my undiagnosed disease on a turbulent, unforgiving journey that never ends. So don’t you dare tell me I’m too weak!

Instead, say: “I really admire your bravery as you go through this. You inspire me.”

11. “You don’t look sick. You’re just being dramatic.”

How do you know what sick looks like? Are you a doctor? Did you endure eight years of medical school so you can identify the subtleties of disease? Not everyone who is sick is obviously symptomatic. In fact, healthy-looking people die suddenly all the time. Not everyone shows obvious signs of disease, and you certainly won’t see them with your untrained eye. My illness is real whether you like it or not.

Instead, say: “You always look so flawless. How do you do it?”

12. “It would help if you had a better attitude.”

I’m already a happy person because I want to be. I am grateful for what I have, all of that. But here I am, just as sick as I was when the illness began. If my attitude had anything to do with it, I wouldn’t be in this mess in the first place. Stick to the facts. Don’t make assumptions that minimize how difficult this is.

Instead, say: “You’re handling all of this so well! How do you cope with it every day?”

13. Other people have it worse. You just need to get over it.”

You cannot tell me how to feel. I know there are bigger problems in the world. But that doesn’t mean you get to invalidate my emotions. They’re my emotions, not yours. Having an undiagnosed disease has stolen a lot from me. At least let me have my feelings.

Instead, say: “If you ever need to vent, I’ll be here to listen.”

Undiagnosed men and women everywhere are desperate for answers. We need a diagnosis, but we also need love, acceptance, and understanding. As we wander through the darkness, blind and without direction, your support is our only hope. With the right approach, we can all shed light on one of the most vital issues of our time. Undiagnosed diseases raise countless questions, and together, we are the answers. And it all starts with some of the most loving words an undiagnosed patient will ever hear: “I believe you.”

Published by

Deanna Brownlee

Deanna Brownlee

My name is Deanna Brownlee, and I have an undiagnosed disease. For 10 years, my unidentified illness has yielded only futility and heartbreak. As much as it has stolen from me, however, writing has always remained by my side. I am truly honored to be part of the CrowdMed team.

  • drmom5

    Pretty good except for number 8. It’s already clear that traditional medicine has nothing to offer her. Why does she still expect an answer from it?

    We may not be able to be cured but we can increase the number of good days we have. Nutrition, acupuncture, improved sleep and managing the side effects of the numerous drugs we accumulate through our journey, can all increase the number of good days.