Recently an acquaintance of mine who has suffered for years from unexplained illness was finally diagnosed. It’s hard to explain to someone who has never suffered from an unexplained illness, but the diagnosis was actually a happy occasion and yet he chose to keep silent. He did not tell most of his other acquaintances or people he interacts with a regular basis, he only chose to quietly tell close friends.
The worst thing you can do to someone with chronic illness is make them prove to you that they are sick. Click To TweetWhen I heard that this person chose not to broadcast the news I thought it was a little odd, but after some thought I came to understand. When you have an unexplained illness you go through a lot. The difference between your new life and the lives of healthy people grows and few people acknowledge it. Sometimes you feel like you’ve been left alone as you struggle to adjust to life with a mystery illness that comes with elements no one ever told you about. When you have a chronic illness:
- Your doctors will call you crazy
- Your pharmacist will challenge the validity of your prescriptions
- The news will mock people like you
- Your acquaintances will think you’re exaggerating
- You will be treated like you’re a drug addict and therefore sub human.
- You will lose friends who think you’re just trying to get attention
- You will lose people who are too busy to consider your illness
- Even your loved ones will question you and think you’re just being lazy
The longer this goes on the more you start to believe that just maybe you are crazy. You begin to doubt even yourself. Maybe there is something wrong with you? Maybe you made up your disease for attention and you just don’t know it? Everyone you know is convinced that you are certifiable, so maybe you actually are? Could they really be right?
And then after years of losing friends and loved ones and thinking that you might actually deserve to be called all the things they are calling you, it turns out you aren’t crazy. You have a diagnosis, so now what to you do? Do you wave your diagnosis in the air showing to all the world that they are imbeciles? Do you wait for the long line of apologetic acquaintances to make their way back into your good graces? Or do you hold tight to the people who stuck by you no matter what and believed you through thick and thin? There are no easy answers, but I chose to hold tight to the people who believed from the very beginning.
The worst thing you can do to someone with chronic illness is make them prove to you that they are sick. For me the most important people in my life are those who have believed me and supported me from the beginning. Those who know me and who I am and have stuck by me in thick and thin. The most significant, powerful, essential words I have ever heard were and are, “I believe you.” If you want so support someone with a chronic illness it’s as simple as believing their words.
Thank you for this. I’ve been undiagnosed for 5 years and relate to this blog post all too well. I still have times when I begin to doubt myself, wondering if I’m making this whole thing up even though I know I’m not. There is nothing more powerful to me than having someone say or show that they believe me. It’s rare but when it happens it is a beautiful thing. And I have to say, your mentioning that an undiagnosed warrior you know was recently diagnosed gives me a little hope that it can still happen for me. So thank you, a million times over, from the depths of my heart. <3
I’m glad I came across this. It made me cry. Although I have had a diagnosis for 5 years of CRPS (Complex Regional Pain Syndrome), I still get the looks of doubt. The looks that say you can’t STILL be sick. You can’t STILL be hurting. Why haven’t the doctors fixed you yet? And the worst is, these looks tend to come from the ones I love the most. This life is so hard. I know that they are trying to understand. I do. But I don’t know in my heart if they truly believe. “I Believe You”. Those three words would make such a difference in my life. Finding blogs like this make my heart ache knowing others go thru what I do, but also bring a sense of normalcy to my life. I know I’m not alone in this fight. Thank you for your words. I hope a loving friend or family member of someone who is chronically ill finds this as well.
Thank you for this post. It is nice to know you are not the only one going through pains, which don’t seem to have a cause.
I hate when someone says “it’s just in your head”! Like one day I just woke up and think – OK, lets get pain in this part of body for today.
Seriously, it is the worst sentence someone could come up with. I understand if someone not understanding about chronic pain says it, but I heard it from a doctor, too.
They are supposed to help you and not just dismiss you like that, and make you doubt of yourself.