“But, what do you have? What are you?”
This is the part where I’m supposed to list all the illnesses and diseases and disorders I’ve collected over my lifetime and use their proper medical terms. This is how we measure each other up, to find out where we fall in the Diagnosis Scale. Are we the same? Are we different? If I told you, would you have an immediate recognition of how I feel right now because you’ve got “IT,” too?
Using this shorthand is not meant to be insulting or belittling. It’s meant to cut to the chase and find out where your battle scars are. It’s the fastest and easiest way to get to know someone else sitting in the doctor’s waiting room or in line at the grocery store who is reading a magazine about health. It’s the quickest way to find out if you want to keep having a conversation with this person. And if you’ve been struggling for months, years, maybe they know of a good support group or a treatment you haven’t yet tried.
It’s Dating for Sick People.
After years and years, I’ve collected quite a pile. My suitcase is full. Disorder-this and Ailment-that.
It is so validating to have a medical professional tell you that what you’ve been feeling, what you’ve been struggling with for so long, what you’ve been trying to tell people about and make them believe is happening to you, that THING that is making you feel like the pits – is real! And it has a name. And here is that name. (Now we know what to call you.)
You feel like you’re going crazy, what with all the symptoms that don’t add up and the tests you’ve been taking that come back negative and the unexplained pain and trips to Urgent Care on the weekend. (Can someone just please tell me what is wrong with me?) And if one more doctor pats you on the head and tells you to just go home and get some rest, maybe consider an antidepressant or a couple of Advil, you’re going to go bonkers. (Maybe I am bonkers?)
And then, they do. They do finally tell you what’s wrong with you and they give it a name and then that’s that. You have IT. Are IT.
And it’s such a relief, right, that it has a name? And you can tell people, like Judgy McJudgerson who has doubted you all this time, that Name and that you have IT, and it feels better, just a little bit, that they know a doctor told you what it was. That the tests were positive. And sometimes it even has a treatment plan, along with drugs meant to help stop whatever is happening that’s causing you such distress. And sometimes those drugs *do* help and sometimes they only have *a few* side effects and dangit, that’s awesome and you’re thankful.
When you wake up with pain or you can’t get out of bed or you miss your kids school event or have to go home because the mall was too crowded and too loud or you get tired just walking down the driveway to get the mail – you remind yourself that it’s ok, because you have IT. People have to understand and you can be easier on yourself, let go of the shame and guilt.
And then, at some point, for some of us, it can start to turn from being a relief to feeling like a suit of clothes you can’t get out of.
So. There I am looking in my health suitcase and whoa. There’s a lot in there and they are varied and some are “worse” than others. Some doctors talk to me like I am that disorder or disease. Some friends and family only want to talk about that and nothing else.
I don’t want to be called mentally ill or physically ill over and over. As validating as it is to have names for things, it’s a balancing act to hold that and also still have your life be full of things that are not that.
I’m not a diagnosis or a disease. I am experiencing them, yes. But, I am not them.
What I am, is being the most Me in my day, every day, that I can be. What I am is a human with some bodily systems that need support. What I am is in love with my body that continues to try and try and has kept me alive for 54+ years. What I am is ecstatic that I keep getting new days and new mornings where the sun comes out and I can tell myself in the mirror that it’s good to be alive another day. And mean it.
What you are is your own version of strong, brilliant, and human.
Your body is trying and coping in the best way it can to help you survive. You, too, could try calling yourself by, and talking about yourself in, more-than-illness terms. The guilt and shame you carry for “failing” at doing the things you want to do in your life due to your Illnesses isn’t needed. Being kind and gentle with your body that is STILL ALIVE and working on your behalf? That’s enough. That’s perfect.
Thank you, stomach, for trying your best to digest the food I eat. Thank you, ribs, for holding together for me every day. Thank you, knees, for hanging in there all these years. And thanks, circulatory system and hypothalamus, for heating up and letting me know I need to slow it down a little.
It is up to us, after all, to see us as an entire human being, even if our doctors don’t.
Practice Something Good
Practice, right now, switching up your language. Write down the name of your diagnosis and under it, write down the body systems that need support. Under that, write out a sentence that pulls it all together so you can tell it to yourself and then others next time someone asks, “What do you have?”
Example:
Diagnosis: Fibromyalgia
Body Systems: Autonomic Nervous System, Hypothalamus, Pituitary, Adrenal Glands
“I’m working on supporting my adrenals and my autonomic nervous system to increase my energy.”
-Updated October 2025