You’re Not Really Disabled

There’s been a trend in my recent writing topics, that I can only define as WTF. I’m not being very eloquent about it, but there it is. WTF stretches a broad range of experiences that I’ve discussed both in my blog and for National Pain Report. One of my doctors telling me he doesn’t believe I need a cane, based on my MRI, but not offering me an explanation as to why I feel I need it because I’m unsteady on my feet, bumping into walls and my knee giving out on me. But it’s perfectly okay to shame me about using it and offer physical therapy as the Holy Grail of cures after three years of procedures and surgery. There’s also been the well-meaning “I hope you feel better,” that while well-meaning, becomes an irritation after you’ve explained your situation multiple times and are not truly heard. Something I haven’t written about but will be covered soon, that also falls into this, WTF feeling, is when you are made to feel as though you are faking your illness with those very people who are supposed to be taking care of you. I’m talking about the medical professionals in your own doctor office and hospital. Today, I’m discussing the very many ways that people (close to us as well as strangers) are in denial about our disability and aren’t afraid to tell us.

·       You’re not really disabled, you’re just fat: Yes, this happens. I have heard it time and time again and it makes me livid. I’ve never been explicitly told this, but I don’t think it matters. In my case, when I was just beginning this chronic journey and trying to figure out what was wrong, my first place to start was my PCP. Instead of sending me for tests or at least another doctor if they didn’t know what was wrong, I was given diuretics for my swollen fingers and forced to speak to a dietician who told me losing weight would be best for me and I should eat from smaller plates. Yes, she actually said that. My experience is a fraction of what people out there experience. I’ve heard of a woman who did not look obviously disabled, parking in a disability parking spot and when she returned, finding a note on her car saying that she didn’t actually need that spot because “she was just fat,” and she was taking spots from “people who actually needed them.”

·       Your disability doesn’t look like mine: This problem isn’t just among the -abled, it’s pervasive everywhere. The basic idea is that because your disability doesn’t look like mine, then you must not actually be disabled. This can be with anything, and I guess it’s because we are judging the progression of the disease or the severity of it through other people. The thing is, we are all unique creatures. Just because I have fibromyalgia and my neighbor has fibromyalgia, and we’ve both been suffering for seven years but I’m younger than her by ten years and use a mobility aid, doesn’t mean I’m not disabled or I am exaggerating my illness. I feel it is hurtful to make those insinuations about someone because we don’t know their entire medical history, nor is it any of our business. We should be supporting one another, not becoming part of this culture of undermining those who are chronically ill/pain. We have enough people doubting us, we don’t need more.

·       You aren’t disabled unless you are using a mobility aid: Almost contrary to my thoughts above, is the idea that you aren’t disabled unless you are using a walker or cane or wheelchair. I don’t know if this thought comes from the way the disability icon is drawn, with the figure in the wheelchair, but it is something even I had a bit of difficulty working my head around when I began using a cane and received a placard. People do not realize the wealth of issues that can prompt usage of a disability placard or identifying as disabled. A cane doesn’t make you disabled. Your disability makes you disabled. PTSD is invisible and the person can run and jump without issue, but needs the disability placard to get in and out of a facility quickly. There are many illnesses and many who have chronic pain but do not use a mobility aid, who are disabled but you would not see. Disability is not something you can necessarily see and society should understand that.

·       You’re not really disabled; you just don’t want to work: This has got to be one of my favorite misconceptions. While I will concede that there are some out there who would use a fake or exaggerated illness to get out of working, I don’t believe that the majority of us do this. Working compromises so much of our identity and is so important to our ability to survive and just support ourselves, that I believe most people who cannot work, truly can’t work. There is a feeling of guilt when a person comes to the decision that they can no longer work and it affects them psychologically too. I know from my own personal experience that you feel defeated and you feel betrayed by your body. You also feel diminished as a person and as though you are no longer allowed certain things because you don’t have your own money. It is a lot of work recognizing that none of this is your fault and feeling good about yourself again. Disabled people want to work. It’s the accessibility of work that is the issue and the reason so many who have a disability can’t work.

·       You aren’t really disabled if you only use your mobility aid part of the time: There are many who are pretty insistent that because I do not use my cane, 24/7, that I am not truly disabled. My humorous come back for this, because I can be snarky now and then, is, “Why no, my cane is actually a walking staff and I’m really a wizard.” After which I proceed to roll me eyes. Just because I feel safe to navigate my itty-bitty house, without my cane, doesn’t mean I am not still disabled. I cannot navigate outside terrain, from grocery store to parking lots without it because I never know what I might encounter. It could be a crack in the road or just someone who is inconsiderate and pushes their way in front of me because I am slow and I lose my balance. The cane helps me not to fall, it helps when I get tired from walking and begin to hurt. It’s my prerogative to use to help me feel safe in an unfamiliar environment. I think I deserve that. So, yes, I’m still disabled.

There are many more instances, but these were the first to pop into my head. Feel free to message me with your experiences and I will do a follow-up piece to this one. As always, thank you for reading.

If you like what you are reading:

https://lovekarmafood.com/blog/
Please donate ❤
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=4MYYJHXFMTGZN

 

 

Advertisements

Chronic Illness: Oh, I hope you feel better soon.

We live in a world where being polite is reflective of manners. Someone sneezes, we say “God bless you,” whether we’re Christian or Atheist. It’s not an actual blessing, as Pope Gregory the Great uttered it during bubonic plague epidemic of the sixth century. [https://people.howstuffworks.com/sneezing.htm] (Just figured I’d throw some trivia in there for you. In case you’re ever on Jeopardy.) It’s just considered good manners and nobody thinks much of it. When you are sick, people often tell you to “Get well soon,” or “I hope you feel better.” Sometimes people mean it sincerely, and sometimes it’s just something people say because they are trying to be polite. Regardless, we don’t usually take offense to it and we say “Thanks,” and go on about our day. However, there are some of us who, while we may not take offense to it, are sick of being told “I hope you get better soon.” It may sound strange to you that someone would get upset over a seemingly benign offering to get better, but when you live with chronic illness or pain and aren’t going to get better, it can become aggravating to hear. Even more-so, is when you’ve addressed this, and your friends or family refuse to accept that “getting better” is not part of your story.

exploding-head

It is difficult for everyone to accept they have a chronic condition, especially at first. Chronic means that there is no cure, and that you will have to live with this condition until you die. It can be very daunting even for the most optimistic of individuals, but you eventually learn to live in this “new normal,” and that doesn’t mean you’ve given up hope, it just means there is a level of acceptance that healthy people are unaccustomed to. What I mean by that is, healthy individuals typically only have dealt with things like a cold or sprained ankle, or maybe a broken wrist where they had a cast for awhile or broken leg where they hopped around with crutches. Some, maybe deal with a chronic illness that is controlled by medicine and if they are careful, that is all it takes to keep them healthy. While still chronic, it is maintained so they feel good a lot of the time. Those like me, with chronic illness that is not controlled by medicine and only manages some symptoms, not necessarily all the time, live in another world.

Here are five examples of why telling someone like me, who has chronic illness, “Hope you feel better soon,” (and other things) can be irritating, and in some instances, makes us feel like our head is about to explode and what you might offer instead:

SheldonBoom

  • It’s been five years since I “got sick.” Either I have the longest flu in history or I’m not getting better.
  • We are only co-workers, but I’ve told you I’m chronically ill and you still pat me on the back and tell me “I hope you get better soon.” It’s okay if you don’t know what to say. I’d prefer “Is there anything I can do,” than anything else.
  • I’ve told you before I have a chronic illness. Somedays are worse than others, it’s just the cards I’ve been dealt. You don’t have to say anything at all. You could offer me a hug. Sometimes that can make all the difference.
  • Don’t lay hands on me and start praying over me. Don’t tell me Jesus has a reason and I’ll understand his purpose. Not everyone is religious and if Jesus has a reason, I wish he would have chosen to show it a different way.
  • I know you mean well when you say, “I hope you get better soon,” but it often leads to “How are you feeling today?” The latter is almost worse than the first because, I feel like I’m disappointing you when I say I’m no different than I am every day. And if I am having a good day, you think all the rest of my days should be good and it just doesn’t work that way. Ask me instead: “Is this a good day or a bad day.” If it’s good, be happy with me. If it’s bad, just let me know you are there.

Hellloooo!

Hello again, blogging-world. Miss me? I missed you. But I needed to take some time off for self-care. It’s been frustrating, to say the least. I think we can all agree, that when you suffer with more than one chronic illness, things can get a little hairy from time to time. Your body lets you know, in no uncertain terms, that you’re it’s bitch. (I really tried to phrase that more eloquently, but let’s face it, there’s nothing eloquent about this situation.)

If you’ve been keeping up with my blog, you know that I’m quite overwhelmed with several different things going on. If this is your first time here, I battle R.A., fibromyalgia, ankylosing spondylitis, IBS-d (but I think that is shifting to a mixed form), sacroiliac joint dysfunction, seizures, degenerative disc disease, psoriatic arthritis and migraine. Everyday is different. Somedays I actually feel what passes for good, in my world. In a non-chronically-ill-person, that would translate to something less than good. Crappy, in fact. I deal with it all as it comes, trying to make the best of the days I feel good and where I am not suffocating from pain or debilitated by symptoms.

These last two weeks have been an extended affair of miserable, but I am feeling as though I am finally bridging over the worst part and may be coming out the other side. When I am feeling my worst, I practice a lot of self-care, which for me includes: hot baths with Epsom salt, listening to mixes on Spotify, devouring Twitter and Instagram, taking a lot of pictures of my adorable cat and dog and spending a lot of cuddle time with the Mister. Unfortunately, the Mister was gone this weekend for his one-a-month Air Force gig, so I had to cuddle with the cat and dog, but we made up for it when he got home last night and plan to do more today, after his work.

In my blog, I focus a lot on issues I see in this chronically-ill-world. I also write about the discrimination I see in the disability world. I share my experiences in both those areas, as well as mental health. Some of my chronic conditions not listed above, have to do with mental health, as I am bipolar, struggle with OCD and PTSD and severe anxiety. As many people can relate, when my chronic illness is flaring, I tend to feel a spike in my mental health issues. Meaning, my anxiety ramps up, my OCD goes a little bonkers and I may get depressed or even slightly, manic. It’s all very interconnected. Today, my writing is more, catch-up. Less focusing on specific things, but rather this monster of chronic illness as a whole. It really is like a vast eco-system, and when something is off, or when something is out of control and flaring, it bounces off and affects the other things. These last two weeks, I think I might have gotten a glimpse of how our actual eco-system is feeling in the midst of all this climate change. It’s been brutal.

I had started a chat on Twitter (which you can follow me @lovekarmafood) on whether or not to take the chance with another gastroenterologist. Something else I am sure you understand, is when you know something is wrong with your body and you don’t feel the doctor is understanding or listening, but being afraid to find a new doctor and having to start from scratch again with tests and meds because, frankly, it’s exhausting. Not only is it physically exhausting having to go to the appointments, but it’s mentally and emotionally exhausting. I am pretty close to starting that search for a new doctor, especially after this week. It was probably the worst IBS flare of my life, with stomach pain that was worse than labor pain and was reminiscent of Aliens for me. But I didn’t go to the hospital. I’ve been there before for an IBS flare and it was not worth the visit. Once they know you have something chronic, they do their best to make you comfortable, but pretty much tell you to see your doctor. And in this day and age with the opioid hysteria, I’m not sure what “comfortable” would mean. Sometimes I feel that as an advocate for chronic illness/pain, and as a writer, chronicling her journey through this illness and pain, it should be easier for me to vocalize with doctors what I am feeling and what I am going through, but I’ve learned something. Doctors (not all) have a way of making you feel that they know best. Some come off as arrogant, while others come off more like a parent, but either way makes you feel like you don’t even know your own body. It’s terrible. And partly the reason for my reluctance in finding a new doctor. But I would really like to feel better, long term, with this IBS.

So that is a little about what’s been going on in my life. Stay tuned for the next time where I’ll be talking about our non-spoonie friends and their well-meaning, but irritating: “I hope you feel better soon,” followed by, “You’re not really disabled,” for my friends (like me) with disabilities.

POTS Syndrome

POTS syndrome is also known as postural orthostatic tachycardia. It is one of a group of disorders which have orthostatic tolerance (OI) as their primary symptom. Orthostatic intolerance describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position, fainting. [https://www.inlifehealthcare.com]

Symptoms Include:
Fainting
Heart palpitations
Shaking & sweating
Weakness & fatigue
Dizziness or light-headedness
Headaches
Poor sleep
Chest pain
Feeling sick
Shortness of breath

3 Types of POTS

Neuropathic POTS
Hyperadrenergic POTS
Secondary POTS
Neuropathic POTS
This is essentially nerve disease. Here, the sympathetic nerve supply to lower limbs does not function properly and so there is pooling of the blood in the lower extremities rather than being returned back up to the heart. This leads to dizziness on standing and an increase in heart rate. This is the most common form of POTS.

Hyperadrenergic POTS
This is a case of high adrenaline. These patients have high levels of norepinephrine in their blood. This leads to increased heart-rate and blood pressure. While neuropathic POTS has lower blood pressure and higher heart rate when standing, hyperadrenergic POTS typically has both increased blood pressure and heart rate when standing.

Secondary POTS
This refers to POTS syndrome that is a result of another under-lying condition that leads to damage of the nerves that usually control the re-distribution of blood. These under-lying conditions can include diabetes, lupus, alcoholism and chemo. [https://myheart.net/pots-syndrome/types/]

Some Spoonies Worst Symptoms and Some Advice:

Stephanie shares: “Right now, I’m struggling most with temperature regulation and sweating. I’m always getting hot and cold at the same time! And I get so fatigued from standing it’s crazy!”

Adara shares: “I can’t stay standing for very long due to dizziness, drop in bp, heart rate and lips going blue. Hands and feet go red and purple and I get brain fog and fatigue. I use a wheel chair now. (I was once a badminton player) I was diagnosed after ten years- took a print our of POTs information to my doctor.”

Adara gives some advice to POTs patients: “Drink lots of water and salt (always carry emergency salty snacks, the way diabetics carry sweet stuff). Wear compression socks, stay cool, use a shower stool/seat and if you want to try physiotherapy/medication, then ask loudly and don’t be given no for an answer.”

A Brief Tale of Kristie’s POTS Experience:
I “spoke” to Kristie Johnson, of Migraine Mantras (Migraine Mantras), via Facebook messenger. She’s been dealing with POTS for eight years now, before doctor’s finally began looking into it and was finally diagnosed two years ago with it.
When I spoke to her about her most aggravating symptom’s she told me this:

“I have the most trouble with blood pressure drops. I get up slower, turn slower, anything I can do to avoid passing out. Gatorade and body armor are the only thing helping me right now. I know when I’m about to pass out, 90% of the time (ringing ears, dizzy, blurred vision or blacked out vision) and can sit or lay down before it happens. Sometimes I can’t catch myself. I’ve fallen down the stairs, fallen into things, washer, a dresser, etc.

When talking about her symptoms, length of time she’s been struggling with her symptoms and her recent diagnostics, she told me:

“Local docs won’t treat me, and I’m actually being sent to a hospital a few hours away to see an autonomic specialist for treatment. It’s 3-ish hours away in a Medical Center in Norwalk and I’m on disability so money isn’t something I have a lot of.”

I also asked her which POTS she was struggling with.

“Reading into it I mostly fir into the Secondary POTS category because I have under lying issues like Lupus and nerve damage.”

Sharing Stories Brings Awareness

Like so many others, Kristie is struggling with POTS and it is my hope, that through the sharing of these and so many other stories, we will bring more awareness to POTS and other chronic illness, to those who do not know or do not understand enough about them. We have begun to learn, the impact our voices have. I encourage everyone to share their story with people everywhere, because you don’t know whose life you will touch. When we are silent, we often feel we are alone. When talk and share these stories, we are suddenly catapulted into a community who can listen and support us.

As always, thank you for reading. Thank you for supporting my blog.
LoveKarmaFood
Please donate if you can. ❤
Donate

I recently hit 1000 followers on Twitter and I want to say thank you to all my followers there who support me. If you’d like to follow me my handle is: @fibrohippiechic and you can follow me on Instagram: @lovekarmafood
Let’s keep sharing our stories!

For Those Who Are Imperfect and Still Struggling: You Are My Heroes

In a land of inspirational TED talk speakers, those who’ve gone through the chaos of mental illness and come out the other side as motivational speakers, do you find yourself still struggling in your 40s and trying to keep it together? You aren’t alone.

I’m not bashing those TED talks either. I applaud each and every speaker who stands up there to motivate and inspire the masses. It’s amazing and I listen often. What I am saying is that sometimes, for a lot of us who are still struggling, it’s okay. I’m not saying that every speaker has their lives in complete order either, but there are times when I listen and it feels like an auditory version of Face Book or Instagram. It’s their filtered, selfie-version. Sometimes, I want to hear someone up there saying that life is fucked up and they don’t have it together and every day is a struggle but they are managing. They are managing day-to-day and hour-to-hour and it’s okay. Because those people- they’re my heroes too.

As I brain-stormed about this idea I reflected on my own posts through-out my blog as well as other writings I have done for other sites. I wondered if I appear the same way that some of those TED talk speakers do to me. Flawless? Put-together? Was I only allowing my readers to see a fraction of what is my challenging life? The answer, I think, is a complicated one and maybe a complicated one for a TED speaker too.

Whether it’s a PodCast, or TED Talk, or a Blog post; Instagram or Twitter Post, the audience is never getting the full picture. They don’t see us 24/7 (thank goodness!) and so there is never going to be a complete image. I believe the whole point of TED talks are inspirational speakers. I know my blog is meant to be uplifting and while I have received comments from readers who’ve called me inspirational, I didn’t set out to be and I certainly don’t feel it from day to day. I am just a girl who is trying to get by, from one day to the next, successfully. There’s a lot that goes into that.

My purpose in this slightly rambling post is this: It’s not all sunshine and rainbows for anyone. Don’t let anything you see, hear or read make you feel badly about yourself. Don’t sit there and compare yourself to someone who maybe had similar things going on and wonder why you haven’t made it out to the other side of that dark tunnel. Your circumstances are never the same as someone else and so you shouldn’t add anymore pressure or grief into your life. I know it’s not easy. Here I am all judgy on TED talk speakers like they set out to shame us when what they are doing is quite the opposite. But I think it is very easy for us to see only part of the story and maybe that is human nature.

As I said right from the start, you aren’t alone. I am no where close to living an idyllic life. I have not yet reached enlightenment! Each day is a renewed effort to make it through, what is, a very challenging life. Like you, I have many imperfections and flaws, some of which I was simply born with, like my mental illness and health issues. Others, are of my own doing, like my brooding, or my inability to say no even when I should. I have external challenges like you too. These are things like my children, who while adults (in varying stages), and still living at home, continue to test my parenting skills as I navigate from being parent-to-child, to advisor-to-adult, while always remaining that loving Mom to them. It’s tough. I have bad days, just like you do and sometimes…I fail miserably. But when I do fail, I try very hard to learn from that situation so that I do it differently the next.

One of the things I don’t talk about as much as my chronic illness and pain, are the mental health struggles. I think it’s easy to forget when it’s not brought up, or when we hear an inspirational talk about how they put their lives back together, that the mental illness is still there. It didn’t go on vacation, or disappear and it certainly hasn’t been cured. What has changed is how the person has learned to deal with it, recognize symptoms and use tools that they have learned to cope with it. Don’t be sucked into some false idea that because they are up there talking about it, almost as if it is in the past, that it is in the past. The only thing in the past is the chaos that was because they didn’t know how to deal with it. That is what changed. I deal with my bipolar every day. I live with my anxiety and OCD and PTSD every day. I haven’t quite gotten to that place where I cope with it and know how to deal with it. Some days aren’t great and I forgive myself for that and go on. Each day gives me the opportunity to learn how to deal with my mental illness and that is all I can ask for. A new day.

The Big (not so) Beautiful Lie

When you are first diagnosed with chronic illness/pain, you are very quickly acquainted with dread and fear which are inextricably linked, in addition to overwhelming anxiety. Chronic illness and pain are something which are uniquely foreign to that which we are accustom to. These are not the flu or a cold, or a twisted ankle from tripping on a dog toy. This is something long term (hence the chronic), for which there is no easy remedy or medicine to cure it. Once you’ve been able to process the diagnosis and conquer the dread, you become more optimistic, regardless if you are naturally pessimistic. I think there is a natural, human desire to want to look at the most positive outcome when you are sick and especially, if you are in pain.

Research mode, typically follows this period of distress and positivity, and when I say research, I mean research. Whatever the ailment maybe you are delving into books, diving down the rabbit hole of Google and looking for anything you can find that might help you battle whatever it is you are fighting. You search for groups on Face Book where you can meet people who are going through the same thing, in hopes of not only finding some comradery, but maybe some clue in how to battle this thing and win. You become a person, previously with no knowledge on the subject- maybe not even knowing it was a disease at all, to someone who might as well have an honorary PhD. However, after all that fervor for learning, what happens next is very anticlimactic; nothing. You may find some things that alleviate some of the symptoms; you may walk away with a few new friends who become an extension of your support system, but you find little in the way that makes a dent in how you feel from day to day. (This can vary from person-to-person.)

Weeks go by; months go by; and sadly, for many of us, years go by with little change. What began as a moderately optimistic journey toward recovery becomes a portrait of self-criticism. What I mean is, doubt creeps into our psyche. Did I do something to cause this? Should I have changed my diet? Become Vegan? Should I have switched all my commercial cleaning agents to essential oils? Stopped drinking soda? Drank more green tea? The questions posed in this self-interrogation are endless and the questioning can continue quite a while, covering your entire childhood through your adulthood. It is this idea that if you were just able to do something different, either through your diet or what you are exposing yourself to externally, that you could get better, or better yet, cure yourself. This is the big, not so beautiful lie. This is what many of us zone in on, trying to assign blame to something, not being able to accept it might be the luck of the draw and that sometimes we simply don’t have control over what makes us ill.

Part of the fall-out from this is when strangers or even extended family members issue us advice on how to get better. There is an inward clenching and mental eye roll as we try to maintain our manners. It’s not their fault that they don’t understand, right? I wish I could be more forgiving when someone advises me on the fine attributes of turmeric, but the fact is, if I haven’t already tried it, it’s likely I know about it, courtesy of my intense research. This isn’t an effort to bash those that mean well, rather, it’s an effort to help them understand and by changing the way they word something, come across less assuming and more genuinely interested to help. Example: “You should be taking turmeric. It will help you feel a lot better. I read…” Instead, “In case you haven’t heard, I read turmeric is really good for inflammation…” or “Have you heard about turmeric? I learned it might help bring down inflammation…”
Lastly, if you are struggling with chronic illness/pain, remember it’s not your fault. Stop telling yourself these big, not so beautiful, lies and be kinder to yourself. You are already going through a lot, and self-blame will not help you.

https://lovekarmafood.com/blog/
Please donate ❤
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=4MYYJHXFMTGZN

What I Hide

(from my friends and family)

About My Anxiety

Though any group gathering can make me worse, what stands out right now is the holidays. That time of year when people have parties, families get together and the stores become a treacherous gauntlet. There are some people who thrive during this insane season, while others, like me, need to ready the mithril armor in preparation.

In my head, I know it shouldn’t be so difficult. Unfortunately, the rest of my body doesn’t seem to be aware of that; they didn’t get the memo, I will have to send a stern letter to management. Oh, wait! That’s me. At any rate, the moment I find out there’s some kind of gathering I have to attend, friends or family, the panic sets in and there’s an incredible amount of mental prep involved. This is partly because I’m ashamed of my anxiety and partly because I feel guilty for it.

1.)  Mental Prep

Here’s how a typical mental prep goes:

“Alright, Liza. Auntie and Uncle are flying in. Mom’s having a bbq and you need to look decent. Enough to pass Mom’s critical eye and enough that I won’t provoke any questions about my mental health. I also have to make sure I fly under the radar of Auntie and Uncle, which I am never certain I do, but they’re always good about not saying anything.” The scenarios will change, but it’s always the same basic idea. I want to appear as normal as everyone else. But I also want people to see that I do have limitations, but that I am still me. I’m a girl. I’m complicated! The mental prep, all humor aside, can be exhausting in itself.

2.)  OCD Worrying

I fret for weeks what I am going to wear. And that is if I know way in advance. If I don’t and it’s something sudden, where I didn’t have time to play, it’s worse. Even when I finally decide on something, I’m not happy. Too tight, too hot, too frumpy, or the always popular, I look fat. Anything to criticize myself and my choice. But no one, aside from my darling Mister, will know how much I worried over everything.

3.)  Gearing up for Conversations

This sounds benign right? I assure you that it is far from it. It’s basically three parts. The first, questions about my health. The second, what I plan on doing with my life. The third, casual, random conversations that should be easy but because I am hyperventilating about one and two, it never is. And, it’s always worse when I don’t know the people I’m around. Alright, so the first question about my health always stumps me. Do I answer honestly? Or will this provoke to much pity? Do I lie and possibly elicit the opposite response which is anything between apathy and skepticism? You might think this is harsh, but t is universally known that someone trying to acquire disability shouldn’t be happy, shouldn’t enjoy anything and definitely shouldn’t laugh. Let’s slide into home with the last, my life’s work- which couldn’t possibly be writing because I don’t get paid for it. Basically, this is just some glorified hobby of mine too keep me busy while I wait for disability. This is truly my least favorite topic of conversation because there is no winning. I could tell them I was being featured in Time or that I was Oprah’s newest favorite thing, and the reaction would still be, “That’s nice dear. When are they going to pay you?” Finally, I don’t do small talk very well. I hate, hate, hate, having to do small talk with someone I do not know. I have no problem sitting in silence and staring at them uncomfortably until they leave.

4.)  Can You Bring Something?

I am lucky that I do not typically host any event at my house. We’re far too small a space for the six people already occupying it so there’s little reason to torture everyone else too. But it usually means I have to bring food and while I don’t mind, I often worry about what to bring. Thinking about it as I write it, I am cognizant of the ridiculousness of this worry and what I put myself through, but it is what I do. I worry about the dish pleasing everyone even though I consider it divine intervention of some kind when I please every palate in my own house. I worry that if it is too simplistic of a dish it won’t be pleasing enough and yet, if I make anything too complex, I know that I will need help or that I will end up exhausted.

5.)  The Anxiety Over Having Anxiety

Finally, and I made this the last thought not because it’s the least of my anxieties, but because I want it to linger in your thoughts.

It’s hard for people who do not understand anxiety to comprehend all the stressors we go through, sometimes just getting out of the house. Yes, just to get out of the house. I’m now sharing a little-known fact about me that not even the Mister knows. On bad days, I can’t leave my house. When I used to work, to compound my misery and guilt over missed days because I was sick, there were days I just couldn’t leave my house because my anxiety was so bad. And, what is worse, is that logically I get it. I’m willing to bet we all do on some level. Stepping out of the house won’t kill me, but my body and the racing heart and the inability to breathe and sickness and nausea I feel, tell a whole different story to my brain. I’ve tried to leave my house and gotten as far as my car, locking the doors as I sit inside and hyperventilate myself into feeling that impending doom. I don’t want to feel like that and I just jack up the anxiety and stress even more when I try to logic my way out of it. I wish there was a way I could be free of it and maybe I will find it one day, but until then, remember that we don’t want this. Remember that before you make fun of someone for being anxious or diminish what they are feeling by trying to rationalize it for them, as though they didn’t already try. Saying things like, “It’s all in your head.” I may know that. I may know it in every cell of my body, but when my heart is pounding and I’m struggling for every breath and the tears are rolling, I just don’t give a fuck. I just want you to hold me.