But, there are certain "truths" that don't hold when you have a chronic condition (be it depression, IBD, or any ongoing disease). While many of the following, common sayings are meant to invigorate or provide confidence to those they are said to and about, most of them cause me frustration, anger or fear. I give you the sayings, why I disagree with them, and variances for the future. (And others with illnesses may disagree with me - but hey, a blog is a monologue. We are all free to our opinions).
This illness is not who you are.
Really? Then why does it incapsulate my life and most of my days? I have had this illness longer than I have owned most things, including my breasts. This disease is, very literally, a part of me. It makes my guts tremble, and keeps me from enjoying mexican food and most raw vegetables. The experiences I have had because of it make up the cannon of who I am, and who I will become, the kind of mother I am, what I want to do with my life. I am proud of what I am despite and because of the challenges CD has given me.
How about: This illness is not the extent of who I am.
Your illness is a battle. You are a fighter / survivor.
It has been written that cancer is not a battle. Neither is my Crohn's disease. While at times, I am at war with my body, CD is also part of me and who I am and who I have become. So, if I become ill, in times of flare, which is out of my control, am I then I failure? Crohn's will not be "conquered" or "survived" by me, as I will never be rid of it.
CD is also a symbiotic relationship in which I struggle to remain balanced. Who has the upper hand varies daily, and is something I sometimes have no control over.
How about: Your illness is a huge challenge. You are a thriver.
You are brave.
I use another words:
"I cannot see anything "brave" about how I live my life. Bravery implies a choice. Someone who lays down their life to save another human being is brave. I didn't choose to be affected by cancer and I don't believe being placed on the courage pedestal helps me to continue living. Just because I have cancer, it doesn't mean I cannot make mistakes or be selfish, but it almost becomes an expectation that because you are a cancer patient that you somehow become the perfect person. These expectations can be tough to live with on a daily basis."
No one would choose to give up days with loved ones to stay inside. No one would choose to give up certain loved things when you cannot do them.
How about: You are coping well.
You are strong.
Am I? did you see me cry yesterday? Or snap at my partner last night? If I am so strong why is my body constantly falling apart? While I endeavor to feel and be strong, I have my moments of emotional or physical weakness, and if my disease flares, does that make me weak?
How about: You are managing well.
You have to stay positive.
Positivity is not a cure for any illness. And sometimes the reality does get you down. Who doesn't love painful diarrhea? But being honest and realistic about your symptoms, treatment, and diagnosis is negativity. It creates realistic expectations for yourself and those around you.
How about: Stay realistic. You may be having a bad day today, but you've had good days before and you may have some again soon.
Pain is good because it lets you know you are alive.
Uh, okay. I get it, we need good times and bad to feel the full range of human emotions and possibilities. But this is stupid. The pain I feel has nothing to do with emotion and everything to do with chemicals tearing my body and mind apart. This saying is like saying "pimples are good because they let you know you have skin".
How about: Pain sucks. What can I do for you to make other things better? Defeat is a state of mind.
Maybe, but I'm not resting or in bed because I think I am defeated. I am in bed because my body demands rest and recuperation. It is recuperating from battling itself and I am exhausted. It is not in my head, I am not imaging this. I am also not defeated. I am taking care of myself. And again, my illness isn't going to be "defeated". When something is defeated, it means something is dead. The only time that will happen with depression or CD is when I am dead, and I'd like to be alive for a while, thanks.
How about: You are doing a good job taking care of yourself.
What doesn't kill you makes you stronger.
This is one that I hate with a fury of a thousand ex-mother in laws. If this is true, then why can't I bench press a buick? There are some times that you just wish the pain or the complications would kill you, so you could be rid of it. And just because you make it through the other side, doesn't mean you are better or bigger or stronger for it. It makes you scared it can happen again. It makes you mourn the loss of what could have been. It makes you change in ways you cannot imagine. There are many things a person can experience that doesn't kill them, and does not make them stronger (rape, attempted murder, natural disasters). Severe pain with illness can be one of them.
How about: What doesn't kill you, changes you. (Or just stop saying this altogether).
We all have the same hours in a day as anyone else.
Sure, we all have 24 hours. Some days (like today) I bound about with energy, amazed at the amount of things I can get done! Leaping from task to task. Other days I wake up, think about getting out of bed, work up the energy to do it, then get up. Showering takes 10-15 minutes, but the rest after the shower? Up to an hour on a bad day. The rest of the day on a really bad day. In the worst of my flares and points of hospitalization I knew I was on the way to getting well because I had energy to want to take a shower. It still took a nurse to help me, and the rest of the day to recover.
How about: You go at the pace you need. Be proud of what you can accomplish today, even if it was just breathing.
And so, my fellow thrivers of "invisible" illnesses, do you agree? Disagree? Are there any you would add? I'd love to hear from you in the comments below:
