I figured it was high time I mentioned some of the funny things the world seems to imagine and come up with about chronic patients. Trust me, I can totally see where some of these are coming from.
- You must be on drugs! – well technically I am, but most of them just keep me alive. Hell, between the INSANE number of blood draws (I’m talking like weekly ones during the last 15 months trying to figure out what is wrong), the B12 shots, IV’s, needles everywhere for shots and bag injections, yes, I probably look like I do a lot of IV drugs to the outside world. And unsurprisingly, I have virtually no veins on my arms to draw blood from anymore (minus my thumb but NEVER EVER let them pull 6 vials from there unless it’s life and death because it hurts like hell and takes forever).
- You are just lazy and want to live off disability! – well laying around stuck in bed or the couch all day is the image of laziness, however, if I could get up and make myself a cup of broth, go on a walk, drive myself somewhere, even stand up without passing out, I WOULD BE. Also, as a general note, if you are truly sick, truly disabled, it is almost impossible to live off disability alone. I finally qualified and it won’t even cover my basics. Between doctors visits, medications, tests, previous bills, food costs, travel, living expenses, etc it is NOT possible. I’ve done the math, there is no way without my parents stepping in that I could survive. AND you have to have NOTHING in order to get Medicaid (health insurance for poverty line/other circumstances). So the fact I tried adulting and made an IRA but apparently, I can’t have that and be sick.
- You can just get over it, believing you are better will cure you! – Okay, nothing against the power of prayer and belief, but if that worked, we wouldn’t even be here in the first place. That is how I managed to keep working for so long. I really tried to believe I wasn’t hurting, wasn’t sick, this was all in my head (which NO ONE EVER WANTS TO HEAR- I’ll speak on that later) but somehow, when symptoms keeps coming, getting worse, and you can feel yourself deteriorating, it doesn’t work like that.
- It’s all in your head, therapy fixes all- I am in therapy, I have been for a decade for other things, I am pretty sure I KNOW the difference between in my head and not in my head. As a side note- most chronically ill people ARE on some kind of medication for mental health any way due to situational depression, brain fog, other MAOI/SSRI for other symptoms.
- If you’re so sick, then why did you come to (insert event, occasion, gathering, special thing here)? – Well wouldn’t you push through a cold to come? When the illness never ends, then if you followed the whole “if you’re sick/don’t feel well/too tired/concerned about the event you can stay home and miss this ONE thing” you would never leave. To try and rationalize my decision that way is unfair. I already know that just getting up, dressed, and out of the house will take its toll on me. I know that just getting up, dressed, and out of the house will take its toll on me. I know that tomorrow when I wake up I won’t feel well. I am sure my symptoms will be terrible by the end of the night or tomorrow. But I WANT to be here, and I enjoy the option of being able to go
- Aren’t you tired of being sick? -YES. I AM. I would very much not to just have the “sick person” label.
- Can’t you just try (insert food/drink item here)? One bite isn’t going to hurt you.- I so wish that was true. With Gastroporesis and my Mast Cell mitigated responses it actually could. I want all those delicious holiday treats, yummy snacks, tasty beers and holiday drinks SO BADLY. It’s already difficult to not be able to make or enjoy them but please don’t remind me. I completely understand where people come from and, being a southern lady myself, I constantly want to feed people too. However, my stomach has decided that it no longer likes ANYTHING even remotely new, different, or actually tasty. (I have been living off lentil chips and lentil pasta for a few months now- and by living off I mean 80-90 % of my daily consumption it one or both of those items- think maybe a cup of food a day for reference). It’s annoying me too…
- You’re just picky about food, want to loose weight, have some sort of eating disorder, etc.- I so wish this was true. I would much rather go through dealing with my EDNOS than this any day. It’s common for people with stomach problems to get a bad rep of being finicky about foods or appear to have an eating disorder. Having experienced both I can shed a little light here. I hold no fears about food. I am concerned about items I haven’t had in a while (or even foods I ate yesterday, the day before, this morning, 20 minutes ago) because my body can decide, just like a toddler, it doesn’t want that anymore. [chicken nuggets they asked for, chicken nuggets they got, chicken nuggets the toddler suddenly doesn’t want anymore and it’s nuclear melt down time]. I WANT that salad, a pizza, a cookie, and I WANT it to stay down. The mentality I held about food during my experience with an eating disorder was very different…I didn’t want to eat, or I felt guilty when I ate. Now, I am excited to eat and more desperate to keep it down than anything. And yes I am VERY tired of throwing up everything and it being the ONLY thing my lack-of-smelling nose will pick up. So please, before you jump to a conclusion about food and start assigning your own diagnosis to people , ASK (this has to be my biggest pet peeve I hear about)
- Are you done being sick yet? Aren’t you tired of trying to get attention and be the center of attention?- I so wish this was a thing. Yes, I was done with being sick 14 1/2months ago (aka 2 weeks into this hell trip). I don’t want attention, honestly I just want people to understand and learn. I want people to ask questions and be curious. I wish they actually would. I don’t want attention for this at all. What I want is an answer. So this is on the forefront of my mind constantly and it will continue to be until someone can give me an answer and a treatment plan that will actually work. It may seem annoying, self centered, or down right bothersome for someone to constantly be talking about their conditions and the difficulties they face, but it is in the hope that one day something will click and it will lead to an answer. I am focused on this because I want to use my personal experience to treat people in the future. My only hope is we all can begin to open our minds to what other people are going through and start to understand how to work through it with them.
So that’s the end of my rant. Some funny, some not so funny. I’ve become a bit cynical about the whole thing and often these assumptions are actually ones that my own mind tells me people must be thinking (I have a lot of free time as you can tell). But honestly, I’ve had these kinda of thoughts pass in my mind before too. And it wasn’t as kind or understanding of a thought as it should be. So let’s be open about it. And let’s be a little bit funny.
As a side note- There is a secret gift giver out there who has sent me the sweetest little surprises and it has MADE my week for the past few months. We have no idea who you are- but thank you, you’ve made a very upset and tired girl very happy.
Life On Fire 