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The Anxiety I Feel When People Ask, 'So, What Do You Do?'

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I truly dread meeting new people. Small talk and idle chit-chat usually lead to being asked anxiety-producing questions like “So, what do you do? Where do you work? Are you working full-time?” Where is a trap door when you need one?!

I never ask anyone these questions because I don’t want anyone to ask me these questions, because I don’t have an answer – well, not a good one anyway. Since I was 15 years old, I’ve always had at least one job. I haven’t had steady work for about six years now and I really don’t like to talk about it all that much. As a person living with chronic illness (that sometimes needs a two-hour nap after a trip to the grocery store), I just don’t have the stamina for a job or the conversation.

When I meet someone new that asks me about my work, I usually say something like, “I’m between gigs right now.” If they press for details, I start stammering a long and turbulent story of my work history (a.k.a. my resume) in a desperate attempt to let them know there is nothing “wrong” with me – I am employable! I usually leave my medical resume out of my ramblings. I’m not sure, but I bet there is probably some Emily Post rule out there somewhere about the timing of introducing the topics of brain surgery and bowel habits into a conversation with someone you’ve just met.

It’s when we part ways that I beat myself up, wonder why I said all the dumb things I said. I get caught up in comparing myself to others, thinking I’m not good enough or worthy of their time because I am not gainfully employed. I find myself projecting what they may be thinking: Are they judging me because I do not have an employer? Do they think I’m lazy? If only I tried harder? Am I too picky? I berate myself for not having a job; if I had a job, I’d have an acceptable answer. Over-thinking: 1, Kelly: 0.

I’ve tried making my employment status into a joke by giving clever yet evasive replies. After a few chuckles from the crowd, I somehow end up apologizing for being flip and go back to my old spluttering script. Here are a few of the responses I have tried:

Self-unemployed: One time someone responded, “Oh, an entrepreneur, how exciting!” I’m not sure if they missed my joke or if they were playing along and I missed their joke.

Domestic Goddess: I stole this one from Roseanne Barr. Usually makes people laugh but I think most don’t know of its origin. I’ve actually had to explain who she is and it kind of takes the fun out of it.

Alchemist: I can take ordinary water and make the most fabulous soup you have ever tasted. And at Thanksgiving, give me the picked-over turkey carcass and I can feed you for days. Actually, I’m very much like Jesus; water to wine, loaves and fishes? Please!

Professional patient: While true, it does catch people off guard and can make them feel uncomfortable and head for the hills. Essentially it gets me the result I claim I want: to be left alone.

Seriously though, after some much needed self-reflection, I’ve come to realize that yes, I indeedily-do have a job; it’s called taking care of myself. What I don’t have is a paycheck.

The other day, I decided to test this new response out. I was attending a conference and someone asked me one of the million dollar questions, “Do you work full-time?” I calmly answered, “Yes, I work full-time at Taking Care of Myself and waited for her reaction. She didn’t ask for details so I offered none (I thought my head was going to explode!). She just smiled at me and said, “Good for you!” Over-thinking: 0, Kelly: 1.

This post originally appeared on Write Down the Middle.

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Thinkstock photo via Szepy.

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10 Awesome Instagram Accounts By and For People With Chronic Illness

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Facebook can be great for keeping up with friends and family, but Instagram is the place many people with chronic illnesses turn to for support from fellow spoonies. Whether you’re looking for funny memes, reviews of treatments and products, or others who are going through similar health challenges, there’s likely an account for you, and the comment threads are likely filled with others looking for support just like you.

We rounded up 10 of our favorite Instagram accounts run by people with chronic illnesses, for people with chronic illnesses. Did we miss your favorite, or do you want to share your Instagram handle with the community? Comment below with the Instagram accounts you’d add to this list.

1. The Tube Fed Wife

Mighty contributor, motivational speaker and Seattle “cat mom” Chanel White, aka The Tube Fed Wife, shares the ups and downs of her life with scleroderma, for which she recently underwent a stem cell transplant. She takes followers inside the reality of her medications, symptoms, doctor’s appointments, and even her spoonie fashion.

2. Gutless and Glamorous

Gaylyn Henderson calls herself “gutless and glamorous” after getting an ileostomy due to Crohn’s disease. She proudly bares her stomach and ostomy bag on Instagram to promote body positivity and encourage others who live with health struggles.

3. The Hurt Blogger

As The Hurt Blogger, Britt Johnson advocates for patients with chronic pain and illness and shares her experiences with rheumatoid arthritis, ankylosing spondylitis and Behcet’s disease.

4. Suffering the Silence

Suffering the Silence is a nonprofit dedicated to raising awareness of chronic illness and disability through art, media and storytelling. On their Instagram, you’ll find out about events, businesses and advocates that bring together and empower the chronic illness community.

5. Fibromyalgia Inspirational

Looking for inspiration and a community that just “gets it?” Fibromyalgia Inspirational shares memes that encourage followers in their fight, and poses questions that allow followers to discuss how they deal with the symptoms.

6. Karolyn Gehrig

do they like me in blue lips because i can look both breathless and alive #hospitalglam

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Karolyn Gehrig started the #hospitalglam hashtag in 2014 to empower herself and others during dehumanizing doctor’s appointments. She lives with Ehlers-Danlos syndrome, and frequently posts magazine-worthy images of herself posing on hospital beds and in doctor’s offices.

7. US Pain Foundation

As a nonprofit working to advocate for those living with a variety of chronic pain conditions, the US Pain Foundation posts inspirational memes and has designed a “Positivity Photo Challenge” to encourage followers to share where they find happiness in their lives.

8. Young People Chronic Illnesses

Day 14 – This is @Tomhomer1 and this is Toms story! I’m Tom, 37 from London. I was diagnosed with CF at the age of two and considering some of the people with CF don’t make it past the age of eighteen, I feel extremely privileged to get to the age I am. CF can be a very time consuming illness with hospital stays, doctors appointments, physio and treatments taking up much of our lives.Fortunately, I’ve had breaks in the severity of my illness which has allowed me to do some much loved traveling, work, get married and since 98% of males with CF are infertile, manage to beat the odds and have a son via IVF.Unfortunately, CF is a progressive illness which means my health regularly declines, sometimes it’s permanent, sometimes not, but since I was particularly Ill last year my CF team decided it was time to be evaluated for a double lung transplant.It was a daunting thing to get my head around and accept that my health has got to that point, but I’ve so far luckily managed to stabilise and stay off the transplant list for a few years more *fingers crossed*. CF can be extremely brutal at how quickly it can take someone’s quality of life away, so I believe it’s important to make the most of life when you can. #CF #CFWarrior #cfawareness #cfawarenessmonth #cysticfibrosis #cysticfibrosisawareness #cysticfibrosisawarenessmont #spoonie #spooniestrong #spooniespotlight

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Run by (you guessed it) young people with chronic illnesses, the account features photos and stories of teens and young adults facing various illnesses. The account also shares facts and memes about chronic illnesses that can be passed along to spread awareness.

9. Tae McKenzie

#goodmorning #ootd #smile #fashion #coat #boots #amazing #wheelchair #wheelchairbeauty #pretty #beautiful #beyou #disability #disabledandsexy #disabledmodel #model #modeling #dırectionsscout @fashionnova #disabledandbeautiful #slay [email protected] #kimobility #rollingforchange #rollingtomakeadifference #rollingqueen #pushingtomakeadifference #girlpower #truebeauty

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Model, actress, fashionista and stroke survivor Tae McKenzie shows off her impeccable style while living with epilepsy. She also holds the title of Ms. Heels for Wheels.

10. Stickman Comms

I’ve felt a bit worse than usual for a few days, for no clear reason. Today I have a sore throat. This usually means I’m getting a cold. My body can’t handle them very well – my POTS (heart rate) issues can go totally haywire. Plus hormones are approaching too. Double whammy. So today I’m prepping for approaching storms of #fog, #pain and #fatigue. Perhaps they’ll hit today – perhaps in a few days. Perhaps they’ll leave me barely able to sit up. Perhaps they’ll only be mild this time. Fingers crossed! But it will pass. I will get through. And the best way to get through is to be prepared:⠀ So between resting and eating vitamin C I am preparing:⠀ meds⠀ tissues⠀ throat sweets⠀ heat packs⠀ blankets⠀ restock groceries⠀ easy-eat, no-prep food.⠀ audiobooks⠀ Book PA to send out all orders⠀ Set up business related posts for next few days.⠀ ⠀ I’m actually close to ready now.⠀ I’m not looking forward to the storm hitting, but knowing that I’ll get through it helps.⠀ ⠀ And so do fluffy socks.

A post shared by Hannah Ensor (@stickmancomms) on

Hannah Ensor uses stick figures to illustrate life with chronic illness, from the challenges of shopping at IKEA with a wheelchair to the frustration of dealing with brain fog. She also creates cards that explain the basics of health conditions like Ehlers-Danlos syndrome and celiac disease and can be passed out to those who need to be educated about your illness.

Tell us about your favorite (or your own) Instagram accounts in the comments below.

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Dear Miss USA Kara McCullough, From a Chronically Ill Woman

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Dear Miss USA Kara McCullough,

You stated you believe healthcare is a privilege, then went on to give an example about how you have a government job (which I’d like to remind you means you also have government-funded health insurance). Not everyone is lucky enough to have a government job that guarantees outstanding health insurance. Some of us were born too sick to get a job that guarantees us health insurance.

You were right when you said that health insurance in the US is a privilege. A privilege for those who were fortunate enough to not have medical challenges. It shouldn’t be that way though.

It is a privilege for those who can get a job that guarantees health insurance. There are thousands of people out there who have a job or even two but still can’t get health insurance through their employer. A privilege for those whose families don’t have small businesses. A privilege for those who are employees of the government. A privilege for millionaires.

But just because it is a privilege now doesn’t mean it should stay that way.

Health insurance should be a right because all people – regardless of economic or health status – deserve to live. A child born into poverty deserves to live just as much as a child who has a trust fund. And before someone says, “Poor people shouldn’t have children if they can’t afford them,” this isn’t just a problem for people who are poor. There are everyday middle class Americans who go bankrupt because their child was born or became sick. You can plan accordingly and save up enough money to have a healthy child. But it is nearly impossible to plan for or save up enough money in advance to have a child that is born or becomes sick.

My life matters.

Becca Atherton

#MissUSA

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Accepting There May Never Be Recovery With Chronic Illness

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Recovery is a interesting word. What does it even mean? Does it mean you are cured for good, or is it an ongoing process? The dictionary defines it in the following two descriptions:

1. a return to a normal state of health, mind, or strength

2. the action or process of regaining possession or control of something stolen or lost

The second definition caught my eye.

“Regaining possession of something stolen or lost.”

In life there are times when we experience losses. Losses sometimes of great value. Losses one may question if they can ever get back. Losses one may question if they will ever truly really recover from.

Can a chronically ill person ever regain possession of the health that was stolen or lost from them?

Can an adult ever gain possession of innocence they lost at a young age due to childhood trauma?

Can a person ever recover from losing the love of their life? Whoever that was, can they feel whole again?

Can someone who feels broken ever really be fixed? Or will they always be slightly “broken” in one hidden way or another?

That’s a question swirling in my head these days.

I don’t want to be “broken” anymore. Not that I ever wanted to be broken in the first place. But how I wish I could close my eyes and open them and have everything suddenly be all better. I wish I could pretend everything away. Trust me, I’ve been trying super hard to forget I am sick. I push my body further than it is meant to go; I think I won’t feel the consequences because there won’t be any. I think I can talk my body out of being sick. I tell it I am going to act as if I am not sick. I tell myself  I am going to live the life of a healthy person. I’ve found myself stuck on this carousel that won’t let me off. I feel like an old school VCR stuck on fast-forward mode and I am waiting to hit the end. What happens next, I’m not really sure – but I feel as if I am catapulting towards it quickly and I’m a bit worried, to be honest.

But then I ask myself – if one thing hadn’t led to another and I wasn’t sick today, would I really be who I am now? Would I be able to understand when people are hurting and spot it from a mile away? Would I want to help others the way I do? Would I even be me? Sometimes though, I wonder who that even is.

I’m a blur of struggling to not fall off the edge and positively fighting the negativity.

So what does recovery really mean then? Does it mean going back to the person one used to be? So the next question would be, do I even want to? My eyes are so brightly opened now to life as it truly is. There are no rose-colored glasses here. There’s the truth as it exists. For some people, one day they wake up and are forever changed. There is no going back and for many that is a difficult pill to swallow. And I see that. I see it and I feel their pain. I watch as they transition through the various stages of grief. I watch as they experience loved ones judging and questioning their battle.
The saying that you can’t understand what a person is going through until you walk a mile in their shoes is 100 percent correct. Everything we think is based on our one-sided perspective.

So how could families or friends understand an illness that refuses to go away? After all, they had a cold, they went to the doctor, the doctor gave them a pill and they got better. They recovered. But their ability to recover from a common illness might limit their compassion, empathy or simply understanding when it comes to chronic illness. Why can’t their friend or family member get better? Thoughts slip in like “They must be bored or want the attention,” “They’re a hypochondriac” or “They spend too much time on the internet playing doctor with Google.”

So in an effort to prove to everyone that despite illness you are still worthy, still deserving of acceptance and understanding, you may travel down a dangerous road of proving this to yourself and to your loved ones. A never-ending push to be enough, to get it all done, to not let anyone down. Walk through the store with those body aches, go to work and maybe secretly cry through the longest ever shift, watch your children sing and dance to yet another song because going to bed and taking your pills can wait.

You don’t want to disappoint, you don’t want to be the reason they are let down, again. You don’t want to be the reason your family is held back for one reason or another. But in the end, sometimes you are and you will be. Maybe there might not be recovery.

The final stage of grief is acceptance.

Maybe you will be ill until further notice. Maybe you feel “broken.” But don’t let it define you, whether by fighting it or giving up to it. Accepting it is just that. You take the illness as it comes and enjoy it while it is gone. Don’t let it harm you by trying to prove it wrong and don’t stop living and dreaming your dreams because you have this new part of you.

But getting there is easier said than done. It won’t happen overnight. As I write these very words I have them on repeat in my mind. Some days will be darker than others and some days you’ll think you have finally accepted your circumstances totally. So take one day at a time. One hour at a time if you need to.

Breathe, close your eyes and breathe again.

You’ll get there. We will get there.

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Thinkstock photo via Grandfailure.

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Why I Believe 'Radical Acceptance' Is Important With Chronic Illness

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It’s time for some serious talk. This is going to be a topic that will likely be controversial among this community of people because we all have widely varying opinions, but I am going to step up on my soapbox and give y’all my two cents. Acceptance of our conditions and struggles is critical in being able to live a life coexisting with chronic conditions. Why is acceptance critical for existence when you are faced with chronic conditions?

First, I want to tell you my definition of what acceptance is – more specifically, what radical acceptance is. Acceptance is basically acknowledging where you are, what you’re doing in the moment and being OK with it. Not judging it or yourself. Just acknowledging it. Simple as that.

Radical acceptance is very similar, but it is acknowledging who you are, where you are, what you’re doing in the present moment and you accept it with you heart, mind and soul. This is me and my journey with chronic illness and acceptance:

I have been diagnosed with a chronic condition that will likely affect me my entire life. I have simple, daily tasks I struggle with every day. But this is my life, and I am at a point where I am OK with the hand of cards I’ve been dealt.

My life may not be ideal, nor will it ever be what I had once expected, but I have learned a lot and it has shaped me to become more than I would have ever thought. It has brought me new friends, a chance to come across and begin writing for this wonderful site and overall it has given me a new perspective on life!

This is radical acceptance. I know who and where I am in life in this present moment, and I accept it with my entire being. I also accept my past and how it has shaped me into the person I am today. For a long time I struggled with trying to justify why I was going through what I did, but acceptance has allowed me to just take my life as it is and find new ways to be “successful” in it.

My life is far from easy, and my road to recovery is just beginning, but I am OK with this because I have learned radical acceptance, and I am able to live my life with what it is.

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Thinkstock photo via Poike.

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20 Things People With Chronic Illness Want to Tell Their Friends, but Don't

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When you are diagnosed with a chronic illness, you might meet and instantly bond with other spoonies who understand what you’re going through. But what about all your healthy friends? When one person’s lifestyle changes due to illness, it can become more difficult to relate to each other or even stay in touch. You might spend your days at home in pajamas while they’re constantly out and about. How do you maintain a meaningful connection?

For those who are healthy, it’s often hard to really “get” what your chronically ill friend is going through if you haven’t been there yourself. And being sick can cause us to worry about being a burden and bringing other people down – so we don’t always speak up about what’s bothering us, physically or emotionally. In order to start breaking down this communication barrier, we asked our community to share what they want to tell their friends about living with a chronic condition, but don’t. Let’s help others better understand what it’s like to be sick.

Here’s what the community told us:

1. “I feel lonely a lot. It’s very isolating being sick and in pain all the time. I’d give anything for you to just stop by with dinner and a movie or a board game so I wasn’t alone with myself.”

2. “Please keep inviting me out, no matter how often I can’t make it. It can make my day just knowing you thought of me and want to spend time with me, even if it isn’t always possible.”

3. “I mostly wish they would remember I’m a person. I need friends, someone to talk to, someone to be silly with, someone to hang out with. Someone who won’t make empty promises.”

4. “That it’s more than just the physical symptoms. That it caused me to leave my job and put me in a horrible financial situation. That the guilt I feel is overwhelming since my husband and I can barely pay our bills. The mental side of chronic illness can be just as difficult.”

5. “I miss the way things used to be, like it was before I got sick. I’m still me. You’re still you. Why should our friendship change just because I’m sick?”

6. “I wish you would learn about my diseases and illnesses, and understand they aren’t going to go away. I’m not going to ‘get better.’ I can only handle my illnesses as best I can.”

7. “I tell most things to my closest friends, but I really try to downplay the level of pain even though they know it’s bad. I couldn’t imagine having the ones I love the most (friends and family) know the true extent of what I feel. No one should have to feel what I feel and the idea that my loved ones even have to know I have pain at all is hard for me.”

8. “You don’t mean to make me feel guilty, but you do every time I hear how disappointed you are when I have to cancel our plans last minute for the umpteenth time. I constantly feel like the bad friend, and I’m so lonely. I miss being the me I was before my illness, but I’m still a good person!”

9. “Keeping up with you intimidates me. I love you and value you, but I’m afraid to hold you back.”

10. “That I’m really, really scared because of it. I’m scared of what my illnesses are doing to my body, of what they could do to my body, of what my future will look like, of losing my friends if I admit how scared I am and if I admit how much more help I need than I ask for.”

11. “Just because I can’t physically spend time with you doesn’t mean that I don’t need you. Just one text message can brighten my whole day.”

12. “I wish you would just ask me what it feels like to be me. Ask what it’s like living my life in pain and exhaustion day after day after day. I wish you would care enough to ask me to explain what I go through, rather than judge me for canceling plans or for being slow to commit to plans.”

13. “Please don’t assume that just because I am up and walking around means I am fine. It probably just means I have things to do regardless of the pain.”

14. “That while I know they think it’s funny to make fun of people who have to run to the bathroom all the time, it really isn’t that funny to me. It’s hard to feel like you fit in when everyone is laughing at a problem you face daily.”

15. “When a friend says, ‘You know you only have to ask for money,’ they don’t realize they’ve set up a power struggle that reinforces my feelings of the illness victimizing me. It makes me an outsider: me vs. them. My friends love me, I know that. They know I can’t work regularly, that I use the food banks, that I don’t own a car or go on vacations. But somehow they can’t internalize the relative poverty I live in. If they feel led to, just surprise me once in a while with a gift. That would make me feel much more like a peer and better understood.”

16. “I’m sorry I’ve been so distant. I’m sorry I constantly change or cancel plans. I don’t mean to be ‘flaky’ or seem like a bad friend. I’m just trying to get through each day.”

17. “I’m very scared you’ll leave when you discover the severity of my illness. We’re very young, and I understand you may not be ready to have someone this sick in your life.”

18. “I may be sick most of the time, but that doesn’t mean all of the time. Not being invited to things is worse than not being able to go.”

19. “Please talk to me about more than my illness. It has consumed my life, but that doesn’t mean I don’t want to talk about anything else. I still like to talk about how you’re doing and that funny video on Facebook. It’s a relief when someone can talk to me about ‘normal’ things.”

20. “I wish you would remember I do need your help. I can’t always be independent anymore. Please don’t act like they don’t exist. I’m still learning to accept my weaknesses. I need your support.”

What’s something you want to tell your friends, but don’t? Share in the comments below.

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