{How} can I help?

Words are amazing things. They can destroy a nation or rebuild the world. The can be beautiful poetry. They can be dangerous weaponry. 

It would be best if in our word usage we keep in mind the power we hold. 

“Welcome to Sweet Frog, can I help you?” On a scale of 1-10 how likely would you be to actually tell the girl behind the counter how she could help you in ways other than “Can I have a taster cup?” I’m guessing about a 0 but hey maybe that’s just me. If you think you’d totally tell her all your life problems and how she could help I have two things to say to you.

1. You don’t seem to have many life problems.

2. Get off my blog, hater.

Now that that’s all taken care of, I wanted to talk a bit about how to effectively communicate when you do care and you do want to help. You have a few options. 

1. The good old question for when you really have no idea what you can do but you truly want to help. “How can I help?”. Very  specific. Not “Can I help?”. Not “How can I help you?”. But “How can I help?”. “Can I help?” sounds far more like an empty gesture or sense of obligation, and no one wants a pity friend. “How can I help you?” makes one think back some sort of business setting with a built-in response of “I’m good, thanks!”. 

2. The NIKE method. “Just do it.”. This is by far the most effective, most direct method. “I’m coming over today at 3 to do your dishes and laundry. Will you be home?”

3. The list of choices/coupon book. “Happy Thursday! You can choose five of the following services free at the time of your choice. No expiration date. 1. Laundry 2. Trash 3. Coffee (never underestimate the power of a pot of coffee) 4. Dishes 5. Mop 6. Vacuum 7. Sweep
Do you have any ideas for how to lend a hand? Sound off in the comments!

Let it {out}

For anyone who wonders about the girl who is in the middle of the dance floor loving every moment but then goes to church and hides in the corner… There’s more to it than you see.

I am a faker.

I fake being well to blend in with the crowd. But if the crowd knows the truth, the act is quite exhausting and not worth it around the people who see right through it. 

Talking about their symptoms is one of the hardest, most painful experiences for someone with chronic illness.

Imagine having a big bright orange baseball bat permanently glued to your back. You’d have to take it everywhere. It would probably become physically painful. You’d have to redo every aspect of your life. People would be asking you questions about it constantly. You’d never have a chance to think about anything else. You’d long for how things had been “before”. 

That’s exactly how it is for us.

No, I don’t know of anyone that actually has a bright orange baseball bat permanently glued to their back, but the complications are more similar than you may think. It might not be as visible to everyone else, but to us, the one living it, it feels obvious. We can’t get away. No breaks. Ever. 24/7/365. Always. Most of us experience chronic physical pain with little to no relief. We have to find new ways to do the simple little things in life we once took for granted, like getting dressed or taking a shower. 

When something upsetting surrounds you in every part of your life you want to talk about anything else. You want to escape. I know you ask because you care but please let me bring it up. I’ll talk when I’m ready.

A lot of us try to block out our symptoms. We way the risks and benefits, decide it’s worthwhile, and then decide to not think about the consequences until they arrive. Because it’s no fun if you’re thinking about how terrible you’ll feel because of it the entire time. But mental blocks are all or nothing so the moment you ask an innocent “How was your week?” is the moment we are forced to return to reality. 

We’ve been abandoned.

Arguably, the most common thing that happens after a chronic illness diagnosis is made, is that the individual’s closest “friends” abandon them, leaving them hurting and scared and alone at one of the most traumatic and sensitive times in their life. That causes some serious trust issues. So if we don’t talk to you about it forever, we’re probably just afraid we’ll lose you.

Don’t push us.

The moment you start pressuring anyone for information they don’t want to give you is the moment you lose their  trus. Be patient and don’t push it.

All this might seem ridiculous and crazy and we’re sorry but I promise we just really love you and we’re hurting too. 

Thank you for understanding.

10 Spoonie {Confessions} – Part 1

1. We sleep. A lot. And then we sleep some more. And just 15 more minutes turns into three hours turns into oh-my-gosh-im-two-hours-late turns into oh-well-im-going-back-to-sleep turns into two more hours turns into oops-i-missed-all-my-meds-all-day and actually getting UP out of bed and everything and getting meds. But even then we’re somehow still tried. 

2. We make up random conversations with diseases – sometimes collaboratively. This one really can only be explained by screenshot 😂.  

3. When we go to the hospital the nurse doesn’t come in and say “Hi I’m_____ I’ll be your nurse tonight.” they say “Hey_____ why are you here again?”. 

4. We know our bodies and can often predict a flare up before it happens but we often keep this information to ourselves because “we couldn’t possibly know that”.

5. Doctors, we know when you’re lying. Sometimes doctors say things to just get us to shut up… Bad idea. Because when you tell me my inflammatory markers are normal but then say my ANA isn’t even back yet… And neither is my TPO… And the only other labs you ran were a basic ASO and IgG with subclasses, I do know that you’re lying. Because I actually do know what those tests are that I convinced you to run after being in the hospital for a month. And I do know that you’re just trying to get me to shut up. 

6. It’s. So. Freaking.Annoying. When. Medical. People. Blow. Us. Off. Seriously, at least read my chart before you insist that someone “of my age” couldn’t possibly know what a phlebitis is. Because I actually get a phlebitis approximately twice every three weeks. So yes, I know exactly what that is. And you, refusing to even assess it, has just made me really really mad.

7. Don’t take us at face value. Just don’t. Saying “I’m well, and you?” is socially polite. If we’re being socially polite around you we probably don’t trust you. If we don’t trust you, don’t expect to be able to trust us because we’re typically pretty skilled in acting. 👌🏼

8. We know which ER in the best is the best for any given issue and at what time of day the good or bad doctors and nurses are working. So if we tell you to go to a certain ER we probably have a reason for that.

9. Friends are great. We love the friends we have. But it’s hard to maintain a lot of friends when we have more doctor appointments than social outings so we appreciate those of you that stick with us a lot. ❤ (Even when we don’t show it)

10. I had something for this, but I’m just… So…. Very…. Tired… 😴

What doesn’t kill you makes you {stronger}

Everyone knows the song. Go into any public place and belt out 🎶”What doesn’t kill you makes you stronger.”🎶 and I guarantee someone will return with 🎶”Stand a little taller.”🎶. I’m pretty sure this was supposed to be a breakup song, but it’s kind of become the battle cry for chronic illness after this video went viral. It sounds pretty cool, but how often do we think through the meaning of the lyrics? Imagine a patient with MS. They might be very close to death in physical strength and mobility, but the people I have had the privilege of meeting with MS are some of the most kick-butt, emotionally and mentally bulletproof people I’ve ever met. This song isn’t about physical strength. I once visited a cancer patient in the hospital and I remember them looking me in the eye and saying “I just can’t imagine how God can use this for good.”. They don’t/didn’t have depression, but emotionally they were falling apart. But you know what? They got through it. They are more confident in who they are now than they ever were before and it’s a beautiful transition. Life might knock us down but it’s about making the choice to get back up. That’s when we get the control. We can’t control our lives or our diagnosis, but we have choices. Come together. Lift up each other. Fight with everything we have. 

Because what doesn’t kill you really can make you stronger.❤️

An open letter to the {loved} ones of someone with Chronic illness 

I’m sorry.

I’m sorry for the days that I call you falling apart because I’m lying in a ball on the floor with a hot pack and I can’t go to the big party we had planned.
I’m sorry for the days I don’t pick up the phone because I don’t have the stamina to speak today.

I’m sorry for the unexplained absences.

I’m sorry for the lack of clarity.
But thank you.
Because even though I’m not the best at showing it and I often forget to even say it, the fact that you stay by my side through every diagnosis, every doctor appointment, every hospitalization, every good day and every bad day just the same, means more to me than anything else in the world. If I had to choose between having you stay by my side or going off my meds and dealing with the repercussions of such, I’d curl up in a ball and cry but then I’d probably go off my meds. Because having someone by my side day in and day out is the biggest thing anyone could ever do for me. I know I’m a pain and I’m sorry. 

But I want you to know no matter what that I love you. 

Thank you. For everything.

My heart {hurts}

Everything hurts.My bones hurt. My joints hurt. My veins hurt. My stomach hurts. My throat hurts. My head hurts. My face hurts. My nose hurts.

But more than any of these, my heart hurts.

My heart hurts from seven years of battling ADHD.

My heart hurts from the dozens of people talking about me behind my back.

My heart hurts from three abusive parental figures.

My heart hurts from seven years of battling depression.

My heart hurts from chronic illness. 

My heart hurts from abandonment.

My heart hurts from being molested by three different individuals.

My heart hurts from hundreds of doctors that don’t have any idea what to do.

My heart hurts from two broken homes.

My heart hurts from attempting suicide. 

My heart hurts from seven years of battling OCD.

My heart hurts from loss.

My heart hurts from grief.

My heart hurts from stress.

My heart hurts from fear.

My heart hurts from loneliness.

My heart hurts from memories so traumatic I block them out of my mind and they still make it through the wall.

My heart hurts from denial.

My heart hurts from exclusion.

My heart hurts from seven years of battling anxiety.

My heart doesn’t just hurt, it aches. It screams. It throbs. It feels the weight of every war it has fought. It feels the weight of the world. Every war. Every battle. Every fight. Every shot. 

But I can’t tell people that my heart hurts. No one understands the depth and severity emotional trauma and depression can bring. 

I say I have Lyme disease and I have joint pain and I get “Oh you poor thing.”, “I’m so sorry.”, “How can I help you?”, “When may I bring you a meal?”. But I tell someone I tried to kill myself because I felt overwhelmed and exhausted and BROKEN and I just wanted to GIVE UP so all the pain would just GO AWAY and I get “That was so selfish.”, “Why in the world did you do that?”, “You never think about anyone but yourself.”, “You’re such an idiot.”, “But you know I’m always here for you so why’d you do that?”, “Why didn’t you see a psychiatrist?”, “You know that’s stupid right?”, “Why can’t you just be happy?”, “You need God in your life more.”.
But I want to tell you something. 
The physical pain of Lyme Disease, Lupus, chronic inflammation, and 7 other chronic infections is NOTHING compared to the emotional WAR that has been fought on my heart day in and day out.
My heart hurts. It burns. It throbs. It aches. It screams
And the hardest part is that no one even tries to understand it. They immediately judge because “Well that’s what everyone else says about it.”.
It’s time.
It’s time for us to open our eyes.

It’s time to see mental illness for what it is – a chronic, debilitating, exhausting group of complex medical conditions.

It’s time to put an end to outdated terminology that contributes to the stigma surrounding mental illness such as “committed” suicide, “behavioral” health, “personality” disorder. 

It’s time to stop the labeling.

It’s time to face reality.

It’s time to stop the stigma.

It’s time to stop the shame and guilt and pain it brings to know that your illness isn’t even accepted and sometimes struggle to accept it yourself but to have NO ONE to look to for help.

It’s time for change. It’s time to realize that psychological health can be just as or more painful than physical health. That being unable to trust your own brain isn’t funny. It’s awful.
Stop the stigma. Stop the pain.

End mental illness.