Talking to People Who Don't Understand Your Fight for a Diagnosis


Talking about your illness to anyone outside your closest family and friends can sometimes feel a little messy. They understand the words “sick” and “doctors appointments” and “tests,” but sometimes they don’t understand the depth of the situation, especially if you are still in the searching-for-a-diagnosis stage.

I am used to the “I hope you feel better” and the “Well, I guess it could be worse” comments, but the biggest one I can’t get over is when someone says, “Well, I hope nothing is wrong” or “I hope they don’t find anything serious.” Somehow this always feels like a punch to the gut. These statements can seem belittling to someone who is trying desperately to find out what is wrong because something obviously is. Sometimes that official diagnosis is all that is between validation and yet again feeling like everything is in your head.

I try really hard not to make a snide, “Well, we are already past the ‘serious problem’ stage but who knows, maybe it’s just a cold” remark when someone says these things to me (sometimes it doesn’t always work that way). I try to calmly explain that this diagnosis, as bad as it may sound, is what we have actually been waiting for, searching for and researching endlessly. This diagnosis is the only thing that fits all of my symptoms. Yet there they stand hoping for the exact opposite, albeit with good intention, which is no less hurtful though.

text that says everyone you meet is fighting a battle you know nothing about

Living with a chronic illness may be normal to those of us who have them, yet to someone who doesn’t live with them, I think these comments really do come from a good place. Most people don’t understand the constant struggles, doctors visits and efforts put into getting your diagnosis. They could never understand hoping that the doctor tells you that you have this lifelong illness all because this is your last chance at finding out what is going on inside your body. They don’t see the everyday battle between you, your mind and your body, so just remember to stay calm and let it roll off of your back. Chances are they just don’t understand and that is OK.

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