woman sitting in a wheelchair

Yes, My Illness Is Visible. No, You Don't Need to Stare.

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I can see you staring at me. It’s fine, I don’t mind. I know I look different. There’s a bandage here with a tube coming out of there. I have wheels under my bum that I can’t push. I wear a hat that covers all of my hair leaving you to question…is there hair?

No, I don’t have cancer. You’re still staring. Just smile – it’s really easy.

I know I’m rather thin and pale and have sunken eyes. My feet are turned in and I’m not wearing shoes and I’m in sweats. And there’s even a checkered blanket over my legs. Without question I look sick. Today my disability is visible.

But if you cover my sunken baggy eyes with makeup I’m still disabled. And if I go out I’m still disabled. And you staring longer won’t make me better. Instead, feel free to say hi or compliment me on my badass wheelchair. Keep your stares and trade them out for any other greeting because I could use more friends in this world.

I’m like everyone else – just sick.

Follow this journey on The Real Princess and the Pea.

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Thinkstock photo via Halfpoint.

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When People See My Social Media Photos and Assume I'm Feeling Better

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The most common situation I come across being chronically ill is that people don’t believe me, mostly because I am always smiling and laughing when I’m around people. Seeing me smile, people automatically assume that I’m “doing better.”

A few days back, I posted a picture of myself I took when I went out last month and people started messaging me, telling me how happy they were to know that I’m finally getting better. Now, while I know they mean well and are probably just ignorant, it comes off as rude and breaks whatever positivity I built up that day.

It’s so easy to judge someone based on their appearance, but when you know someone is chronically ill, please try to be a little polite while making comments like these. Whenever I post pictures of myself going out, all loaded with makeup and smiling, I get messages like “I’m so happy to know that you are finally getting better,” but when I disappear off Facebook for a long time or share something about my illness, the same people tend to ignore it.

I get that some people are uncomfortable talking about illness and sad things, but if those people really care, I would ask them to please take out a little time to ask me how I am actually feeling, rather than being silent for months only to comment “you look so happy” on one of my pictures.

I have been dealing with severe chronic illnesses from more than six years now and I have spent much of that time on my bed. I’m almost always housebound and bedbound so when I get to go out, even if it’s for a doctor’s appointment, I like to dress up and do my makeup so that I look somewhat presentable.

And because I absolutely love to take pictures, I will give my phone to my mother as soon as I step out of the hospital and ask her to click my pictures, which I then post online because let’s be honest, that really makes me happy. In fact, one of my greatest stress busters is taking pictures and getting mine clicked, so I don’t leave any opportunity in fear of not getting another for God knows how long.

But because people see those pictures, they immediately assume that I’m getting better and when I tell them that I took it just outside the hospital, they look at me as if I’m lying.

Because who would get all dolled up just for a doctor’s appointment? And if I’m really as sick as I pretend to be, how do I get the energy to dress up?

This is when I want to tell them that I have gone to the hospital in the middle of the night, unable to breathe, in my pajamas and with my hair tossing up in different directions. I have spent and still spend days not combing my hair and just using my energy on things that are more important, like brushing my teeth and going to the washroom.

I want to tell them that I go to a hundred hospital appointments a year but I don’t post a hundred pictures because most of the time I’m not even in a condition to make sense of my surroundings.

But there are days when I can afford putting some energy in dressing up and getting a few pictures.

There are days when I like to walk into the cafe right next to my hospital. And when I post my “check in” to the cafe, people immediately message me saying that I never go out with them. I’m sorry but I don’t feel like mentioning my illness all the time. It already takes up a huge part of my life. Sometimes I want to pretend that I am not ill. I don’t always want to write that I went to the cafe after a dreadful appointment or after crying my eyes out at the doctors’. Because that’s not important.

I personally like to focus more on the positive things of life, so even though I have accepted my illness, I try not to let it poke its ugly head in everything.

I like to post my picture in the cafe, laughing at something and then leave it at that. No explanations. Why should I feel the need to explain?

When you have a chronic illness, it’s just about managing. Some days you can’t get out of bed while other days you can go for a little walk or even run.

And that’s completely normal.

Living with a chronic illness, we all have both good and bad days. We have limited spoons (energy) which we distribute into tasks that are more important.

And everyone’s priorities can be different. That’s what makes us human.

I am always up for raising awareness and I really love when people take out time to ask something about my illness (even though it rarely happens). I’m always open to questions because that’s the best way to raise awareness about all the rare invisible diseases that affect millions of people every day.

But when people automatically assume things and fight with me because I went out yesterday but when they asked today I refused, it hurts.

It really hurts.

It takes me a lot of time and effort to plan for an outing and even then it’s almost always cancelled because my body decides to give me last minute surprises.

There’s one thing I want to tell people – please, please try to understand because all we chronically ill people need is understanding, support and kindness. Please know that we are doing our best to live this life, irrespective of what it brings us.

And never ever judge someone on the basis of how they look.

You never know what hides behind that smile.

Find me @its_little_ayra on Instagram where I share my chronic illness journey and the ups and downs that come with it.

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The Anxiety of Leaving My House as a Person With Chronic Illness

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Every time I’m planning a trip away from home or a holiday, it terrifies me, especially if I’m traveling alone, because, put simply, I don’t trust my body.

It’s hit or miss if my body will hold out. I plan the best I can, I get taxis instead of buses and I request assistance where I can but it’s still a massive ask, and I don’t know how it’ll go.

I don’t trust that I won’t faint in the middle of nowhere. I don’t trust that I won’t get brain fog and end up lost. I don’t trust that my joints will hold out and I’ll be able to walk. I don’t trust that I won’t get really dizzy and sick and be unable to leave a random bathroom. I don’t trust that my body won’t just give out on me.

Every time I leave my house I take supplies, snacks, extra medication, phone charger or anything else I need in case I get stuck. All I hope is that one day, when I’m more used to my health conditions, this will get easier because for now, leaving my flat for more than a few hours is terrifying.

It feels like my thoughts are constantly racing. My mind has to be constantly occupied or I spiral into panic. As long as I’m busy I’m OK. I do crafts. I work. I practice mindfulness. I play games. I read. I’m constantly on the go. I guess I’ve learned how to manage my anxiety, because it works – as long as I keep myself busy I’m OK. It’s exhausting.

This is just while I’m at home. Once I’m out the things I can do to occupy myself are limited, and my anxiety shoots up. A short trip is OK, like going for a coffee or something. It’s exhausting, but it’s only a few hours. I can occupy myself for that long – it doesn’t take too much out of me. A whole day out is horrible. I’m physically and emotionally exhausted. My mind is constantly fighting against itself. Desperately clinging onto the things that make me feel safe. Desperate to run back home. My mind constantly racing, not stopping on any thought for too long in case it drags me down. It’s exhausting.

This post originally appeared on PoTS & Spoons.

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Thinkstock photo via Oppdowngalon.

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The Ongoing Process of Grief When You Have a Chronic Illness

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Being chronically ill can often mean existing in a continual state of grieving.

You grieve for the person you once were.

You grieve for the loved ones who have left you because it is all “too hard.”

You grieve for the job you lost, the study you had to give up, the volunteer work you devoted yourself to.

You grieve for the parties you are no longer invited to, the weddings, funerals and functions you cannot attend. Loved ones live and die while you watch from your bed.

If you have had surgeries, you may grieve for your body, the parts you have lost and the damage done to an already fragile being.

You grieve for the person who did not know trauma, did not know pain and did not know that some people spend their whole lives in a perpetual state of sickness they can do nothing about.

Many of us have difficulty handling grief. We might feel discomfited by a display of “negative” emotions in a society that praises positivity above all, even to the point of repression and falsity. No one wants to be confronted with a reminder of their own morbidity and mortality, to be made aware that the world is not a safe place.

Those experiencing grief – not only the chronically ill, but those who have lost loved ones or experienced other trauma in their lives – will know what I mean. The looks you get when you admit you are not, in fact, doing fine. The hasty changing of subjects when your feelings come to the fore or the general shuffling of feet and looks of discomfit when you are honest about your life. “Get over it,” is a not-uncommonly heard phrase. “Move on.”

Given that nearly every single person will experience grief in their lives, this kind of insensitivity seems inexcusable. Perhaps the media is to blame – as a society, we do not discuss grief well (or chronic illness, for that matter). In a world that prefers the black and white – person gets sick, they get better, they are happy, the end – there is no room for shades of grey, for those who have to grapple with their bodies and emotions day after day and manage an unwieldy tangle into some kind of life.

It’s time we start acknowledging that grief is a process that can take a lifetime. That it is OK to not be OK. That being chronically ill can take a significant mental and emotional toll, and that we might grieve not only over our illnesses, but for those who have left us because of them.

No one likes loss – especially not those who are in the process of grieving themselves. We may have no choice, but you do. If someone you love is sick, traumatized or otherwise grieving, you have a choice. You can run away and pretend like if you just shut your eyes tight enough, the terrible things of this world may pass you by, like so many bogeymen in the night.

Or, you can embrace the world, and by extension your loved ones, in all shades of grey – happy, grieving, sick, sometimes fine, sometimes not. Reaching out a hand of support – sending a text message, making a call, asking “how are you?” – takes only an instant, but makes an indelible impact. If you open your heart to someone who needs you, you may well find that both of your lives have been enriched.

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Thinkstock photo via tatyana_tomsickova.

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8 Necessities for a Comfortable Hospital Stay

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It’s practically a fact of life. If you are chronically ill, you will probably wind up going to the emergency room and you will probably be admitted at some point. Hopefully it’ll be a short stay, but there are a few items you’ll need to stay comfortable while you are there.

There’s the obvious family and friends to visit and keep you company. The ones you need most are the ones who don’t push too hard, who know when you’re tired and need to rest or who will sneak in a special (diet-approved) snack because hospital food isn’t the best.

There are also some less obvious things you need:

1. Pajama bottoms: Often the nurses will let you wear them under your hospital gown if they don’t get in the way of anything medically. Hospitals can be chilly and that bare bottom look isn’t pretty.

2. Headphones: Hospitals can be loud and hard to rest in. Use them to listen to relaxing music.

3. Earplugs: For when you just want to sleep with no music or noise.

4. Some sort of streaming service: Hospital TV isn’t always loaded with the best options. Watch on a tablet or laptop with headphones.

5. A neck pillow: I use one of those curvy U-shaped ones. Maybe it’s just me, but hospital pillows make my neck feel horrible.

6. A universal charger for your devices: They’re generally longer than the ones that come with your device and your device will most likely be getting a lot of use. The longer the cord, the easier it is to use while charging.

7. Nice lotion: There’s no better time to get yourself nice and moisturized.

8. The softest, most comfortable outfit you own: You don’t want to leave in restrictive, painful clothing. That’s a mistake you don’t make twice.

Those are a few of the things I find necessary for a hospital stay that’s as comfortable as can be. What are yours? Let me know in the comments!

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Thinkstock photo via monkeybusinessimages.

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Vera Haynes Illustrates How Many iPhones You'd Need to Pay to Treat 10 Different Conditions

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After Rep. Jason Chaffetz’s comments about forgoing iPhones to pay for healthcare, librarian Vera Haynes made a series of infographics to show how many iPhones you need to pay for medical treatment.

Read the full version of Vera Haynes Illustrates How Many iPhones You’d Need to Pay to Treat 10 Different Conditions.

Read the full transcript: 

Do you know how many iPhones you’d need to pay for medical care?

One librarian took the time to find out in response to a comment made by Rep. Jason Chaffetz.

“Maybe rather than getting that new iPhone that they just love and they want to go spend hundreds of dollars on that, maybe they should invest in their own healthcare.”

Vera Haynes, 24, a librarian in Hays, Kansas, lives with Type 1 Diabetes.

Using available research and the iPhone 7 (USD $649), Haynes determined…

Asthma = 5 iPhones

Rheumatoid Arthritis = 8.8 iPhones

Stage 2 Chronic Kidney Disease = 10.8 iPhones

Lupus = 20 iPhones

Epilepsy = 21.5 iPhones

Schizophrenia = 23.8 iPhones

Type One Diabetes = 35.6 iPhones

HIV Antiretroviral Therapy = 35.6 iPhones

In Vitro Fertilization (IVF) = 66 iPhones

Breast Cancer = 80.9 iPhones

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