On one of my last days of work, as I cradled my head and struggled to get through the short shift I had that evening, on the way out, my coworker looked at me and said: “You know, for as bad as you feel, you certainly don’t show it”
It was the first time I stepped back from a comment like that and realized that she wasn’t trying to diminish me. She was coming from a common place. She knew exactly the pain I was in, and was truly almost impressed that I could go on with my day and appear to be a high functioning adult.
And that is where this post came from.
There’s so many of us, who day in and day out are fighting. Fighting for the pain to stop. Fighting for those around us to just let us be or try and understand us. Fighting to hide what’s going on. We’re all simply fighting to be normal, but we never will be, and that’s okay.
I took the time to reach out to people with conditions ranging from migraines (like mine), to anxiety and depression, to Crohn’s disease, to interstitial cystitis, and those with general chronic pain. I in turn reached out to these people’s significant others and caregivers and the able bodied people who may have at some point in their life had to work with or live with people who are suffering.
I wanted to focus in on the comments we receive and how as a whole, we respond to those giving the advice and those we see as “not taking the advice”.
In this community, we are warriors. But some days, we’re simply stopped. We get too angry. Someone extends their hand to help and throws us off with what they’re saying.
“You can’t just lay in the dark all day. That’s just lazy”
“Just look on the bright side”
“Well can’t you just do ‘x’ and everything will be fine?”
“Is she secretly anorexic?”
“You need a REAL doctor”
And other small things, like starting every conversation with “how are you feeling”. Chances are we are always feeling some sort of way that isn’t great. Stop bringing it up and learn to ask about something new. So yes, I will lay in the dark all day. No, I prefer the storms. It’s 2018 how are we still using the “r” word? My disease doesn’t have a cure, sit down and shut up. Stop commenting on someone’s weight. Unless you have medical credentials, don’t comment on who I’m seeking treatment from.
As put best by one of my favorite warriors: “Most comments come from a place of love and concern for me, but damn think about how your concern comes out of your mouth”
Outside of the endless comments… and yes my list could have created a book, but I had to simplify it. we spend most of the time feeling alone.
When asked how comments differed when they came from friends/family verses strangers, the answers all ran together.
Our families are hurting us. Our families are the ones who are closest to us and have the biggest impact on us, so when they continue to treat us as burdens and refuse to even pretend to try to understand its much worse than some half-assed assumption made by Chad at Starbucks.
We’re pushed to isolate ourselves, because we don’t want to keep feeling rejected. We’re treated like the burdens our conditions try to make us. But our lives our more than our disease, and family of all people should understand that.
Although we’re plagued with people who are trying to be well-intentioned, there are plenty of things that do come across well. However, just because these come across as sincere for some, they may not for others.
Knowing that people are reaching out after spending time researching, or they’re simply taking the time to ask how they can help rather just giving advice feels good. A lot of the time, it’s just enough to have people around you who aren’t trying to fix you, but simply want to be along for the ups and downs.
“My boyfriend has done his own research on how he can try and help me through [my migraines]. He bought me CBD oil for my birthday because he read that it helped a lot of people and he researched a ton of companies to make sure he was getting quality oil…”
Now, I’m not saying go out and spend tons of money on treatment options for those around you, but it certainly comes across much better if you’re showing an option to someone and offering to help out. We often can’t afford every treatment that is suggested to us, so if you really think something can be beneficial, offering to help us cover the costs can go a long way. But, please, dear God. Don’t get angry with me if you’re last resort is saying “if you can’t afford this I’ll send you a check” after I’ve expressed I’m not interested in a treatment option.
When asked to share something with the general population something that they should be reminded of, here’s what I received:
“Even though you can’t see whats going on, doesn’t mean it doesn’t exist”
“Be kind to people. Everyone has their own story”
“There isn’t always a cure”
Now, let me turn the table. There’s a lot more healthy people out there than not. They’re everywhere and frankly it is really frustrating, because they’ll never fully know anything about any of our conditions because you literally have to experience it.
But, that doesn’t mean we don’t need healthy folk in our lives. Their our friends, our family, our physicians, our coworkers. We can’t escape them. We don’t want to throw our disease all in their face, but lets be honest, having people to talk to and having people around you who recognize that things aren’t always peachy helps tremendously.
When asked about how they give advice and how they feel it is taken, a lot of the people I spoke with emphasized how important they felt it was to speak on things you know a little about. If you don’t know and want to help, go out and do research before opening your mouth.
People are typically giving advice from a place outside of the internet. They may be sharing what worked for them or a family member.
They aren’t simply pulling some random piece of advice out of their ass. It may come across that way, but they don’t know that.
Not one person I spoke with felt as if they’d intentionally said something that wasn’t sincere. They may not recognize how their advice is received.
One thing that is frustrating, as one individual expressed, is when you are completely aware that advice from medical professionals is being ignored. It’s hard to work with someone when you are aware that they could be doing more.
What’s even harder, from my point of view, is that you don’t always know either if what the doctor is suggesting, is something the person suffering can do.
When my doctor put me in physical therapy for my neck, she made my neck tension 10x worse. I’m no longer doing the exercises for obvious reasons, but not everyone may think those reasons are valid.
There were some really powerful things I heard that our loved ones want to remind us of.
“Don’t stop fighting to be pain free”
“Be proud of every victory”
“You’re not invisible, your struggles are real and should be heard”
“I would definitely want people to know that people are happy to help them, and they aren’t burdens to their loved ones. The people close to them really want to help and they can reach out for whatever they need”
It’s really clear that on both sides, we are struggling. Struggling to understand and struggling to find a way to relate to one another.
On one side, it feels as if there’s a lack of empathy.
People think we can control these conditions. News flash: We Can’t.
People often overlook that conditions manifest differently in everyone. Anxiety shows differently in each patients. No twp migraine sufferers share the same experience.
Reading more into conditions can make you less educated. I promise, we’ve read thousands more studies, so you citing one or two sources makes you sound like a know it all and you’re only further hurting. If you’re going to take the time to do research, make it specific and know that sources vary as much as the conditions themselves do.
The disabled community often dismisses those with invisible disabilities. And that’s hard. We can’t be normal, but we aren’t welcomed by those suffering from visible conditions.
Sometimes, we don’t want to talk about our condition.
For those not suffering, they know it’s hard to understand. They also know that on both sides, we forget how hard and how different the other’s life really is. It’s hard to change that.
But, in looking to improve how we interact, I simply ask that if you’re suffering, find a way to talk about it.
There isn’t enough dialogue. Even if you aren’t specifically writing a novel on how your life has changed, there’s plenty of stories and blogs out there that can help give valuable insight to those in your life who want to help.
Often times, people giving advice have a hard time, as we don’t always explain what we’ve tried. Yes sometimes that can be a long lengthy conversation, but if someone truly wants to help, this conversation can be a really important one.
Finally, we don’t always want answers. We don’t always need someone telling us what to fix or change. We just want someone by our side. We want someone on our team. We don’t want to be alone.
It’s easy to change your approach from giving advice to asking how you can help. To being sensitive. To acknowledging that the person you’re speaking to may have already tried this.
“The most alienating thing is hearing that everyone around you wants to fix you. You can’t be fixed. You can only be loved for who you are.”