Wednesday, September 3, 2014

What We Wish You Knew

Maybe it was just a particularly rough weekend, but something kept happening to the stories on my Facebook newsfeed. Over and over again, I was seeing my friends frustrated about the comments made by family members, by friends, by strangers about whatever struggles they face. I was seeing snippets of heartbreak at those I loved being cast aside by the people who are supposed to be there for them simply because those people couldn't deal tangentially with whatever that individual personally lived.

It's something with which I'm all too familiar myself, and it got me thinking. How many things are there that we, those who struggle with whatever we struggle with, wish that other people understood about us?  What would we stamp on our foreheads if it made people a little more compassionate and less judgmental? Why have we been cast aside, why have we had to endure the terrible things that people say?

And so I asked my fans what they would want the world to know.

I wasn't really prepared for the response.

Essentially, it all comes back to this truth, one that reveals itself over and over and over again.

Yeah, everyone. We all have our issues, we all have our struggles. Some of us carry greater burdens than others. Some of us struggle more. Some of us have to deal more with what the world says about us.

And none of us ever really knows what someone else is facing.

The best was to approach this truth? Compassion.

It's pretty simple, actually.

The common thread that began to run through the comments left by my fans and friends became obvious quite quickly. Most, but not all of the conditions that they were struggling with are the invisible ones. The things people can't see. The things that aren't obvious to the casual observer. The things that happen inside our bodies, inside our minds.

Fibromyalgia, multiple sclerosis, anxiety, depression, thyroid problems, diabetes. I could go on and on. The vast majority of the frustrations were rooted in these diseases of invisibility.

Is it possible that people are really that simple? That they are more sympathetic to the situations of those with obvious physical problems?

Honestly, I think so.

There's an argument to be made, in addition to this, that people are more understanding of the more common conditions that they can wrap their heads around. We all know what cancer is, so we all have a sense of the gravity involved. We might not be so understanding of MS or COPD, not because they are less serious, but because we're just collectively less familiar with them.

Is any of this an excuse? Of course not.

An explanation? Perhaps.

So, what I'm trying to do here is to gather the comments these amazing and brave people left and consolidate them into a list type format for reference. I have never attempted this before, so cut me a little slack if it's discombobulated.

Here's What We Wish You Knew

  • Blaming and shaming us for our conditions is cruel and it doesn't help, even if we might have had a hand in it. Many of us had no choice and are not here through any fault of our own.
  • We are more than our diagnoses. Please remember that we are humans who live with _______, not _______. My condition may limit me, but it doesn't define me.
  • If you have something to say about my condition, say it to me, not to anyone behind my back.
  • When we ask for help, it's for a damn good reason. It probably took us a long time to work up the courage to ask. Please do not mock us.
  • If we tell you that we are tired or sore or hurting or need to take a break, we really do need these things. 
  • If we can't deal with a social situation, give us some space. There's a reason we walked away.
  • Please don't question our choices, the choices of our caregivers, the choices of our doctors. If we want another opinion and we want it from you, we will ask.
  • Please don't mock our conditions or try to minimize them.
  • Please don't compare what we are faced with to anything you have had to deal with, or to that one person that you knew ten years ago who dealt with it. This is our journey. Feel free to come along for the walk, but remember this is our walk, not yours.
  • Depression and anxiety ebb and flow. Some days are good days, some days are bad days. It's almost never a reflection of you. It is us. There is no fast fix. There is no set time frame for when we'll rebound. Telling us to cheer up or calm down makes things worse. 
  • Telling me to just "take a pill" doesn't work. Sometimes pills don't work. People being dismissive certainly doesn't help.
  • PTSD is different for every single person who faces it, and it happens to far more people than most understand. Triggers can come without warning and at any time. 
  • We may not react logically, not because we choose this, but because we can't.
  • ADHD isn't something that only happens to kids. Adults deal with it too. Just because you got distracted once doesn't mean you have ADHD.
  • OCD is a serious condition. Being particular isn't the same as OCD. Joking about something that compels a person to engage in repetitive behaviors constantly isn't funny.
  • Bi-polar is a real condition with complicated treatments.
  • Fibromyalgia is a real condition. I have a hard enough time with doctors, I don't need people who are supposed to care about me to question the legitimacy of my condition.
  • I'm not here to be your inspiration. Please don't focus on how awesome it is that I function. It's degrading.
  • If my condition causes me to be forgetful, please be respectful of the fact that I may need you to repeat things. I'm not being a pain in the ass on purpose.
  • Seeking treatment for chronic pain does not make me an addict.
  • If I'm having a good day, it's because I'm having a good day. I still have ______, and tomorrow could be a bad day. I haven't been magically cured.
  • If you want to pray for me, that's fine. It would be more helpful if you offered to actually help me when I need help though. Don't tell me that God is going to cure me or that I need to pray harder. 
  • I don't want sympathy. Don't be nice to me just because of whatever is wrong with me. Treat me like a normal person.
  • If I mention what I struggle with occasionally, don't accuse me of being negative. I'm being real. Sometimes life sucks. Don't just cut me out of your life because you think I'm not positive enough. 
  • If you want to give me opinions on my condition, educate yourself first and don't confuse what is going on with me with something else unrelated.
  • Don't send me links to fad diets or supplements or rumors or magic cures. If it was that easy, don't you think I would have already done it?
  • Sometimes I can get overstimulated and that can trigger symptoms. Heat, light, sound and weather could affect it. I'm not being sensitive to make your life difficult. Honest.
  • I might not be patient with you if you complain about having a cold or other temporary ailment, especially if it's something I have to live with every day. Try having Lupus for a few decades.
  • It's entirely possible I passed whatever is wrong with me onto my kids. I worry about this all the time. Please don't try and make me feel worse about it.
  • If I look different, if I look tired, if my face has changed because of my condition, if my hair has fallen out, try not to stare. Try not to make a big deal of it. I know already. Trust me, I know.
I *think* I got through most of them. If there is something I missed, or something else that you would like people to know, please add it in the comments. 



  1. I <3 u.... Perfection in prose. xoxo

  2. You nailed it..just as I knew you would..xoxo..thanks

  3. Amazing!! I have CRPS and everyone always has remedies for my pain but no one has even researched it to know that what they are suggesting compounds's frustrating!! Thank you for writing this!!

  4. Just because I rarely complain about the pain doesn't mean I don't feel it anymore, have some compassion when I do say something instead of thinking I'm exaggerating for attention.

  5. Standing....applauding, with goosebumps and tears streaming down my face.
    I have so much to say that I need to think it through, in order to adequately discuss the very deep feelings this has surfaced. Most of all, thank you. When my voice feels silent and small, you say everything that is in my heart and soul, perfectly. I love you. Xo

  6. Oh, Jesus. You nailed this. I am 32, and was diagnosed with a genetic neuropathy. Some family members are amazed at what I can do, what I have plans to do, while others attempt to set my limits for me. These same people refuse to acknowledge that my mother (who has the same condition), has a much harder time with just about every damn thing.

  7. Well spoken. Many in our family have invisible conditions. My seventeen year old niece has a heart condition abbreviated POTS. She's been fighting it for years. Among other things, she can't go to school or drive. When she has a good day, her Mom will sometimes take her out to lunch. She looks older than a teen, so now this doesn't happen so much, but she and her Mom used to get the nastiest looks. Judgmental assholes assuming she should have been in school. My sister-in-law would either ignore them or point out that homeschool has different hours. Even when, as my niece's was, the home schooling is administered by the district, because there was no accommodation the school could make to help her not randomly pass out when she stood up.

  8. Possibly the best list EVER, and I have read a lot of them. You included things I hadn't even thought of, that needed to be included.


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