Why 'How Are You?' Is Such a Difficult Question to Answer

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“How are you?”

A question that seems simple enough to answer. It demonstrates that someone cares. It should be a nice thing to ask someone.

But I never know how to answer.

It’s a question I dread. If I’m asked in person, I sometimes smile and say, “Yeah, I’m fine,” and other times I just shrug my shoulders, not wanting to answer. But also not knowing what to say.

When someone sends me a text asking me how I am, I ignore it for a while. Anxiety fills the pit of my stomach as I try to think of some way to answer it. I leave it unread until I have an answer formed and ready to reply with, but I dread responding. What if someone prods for more information?

How do you answer that question when you can’t make sense of how you are yourself? How do you answer it when most days are bad days and it’s a struggle just to make it through? I worry that if I always say I’m not doing too great, it desensitizes what I’m saying and people will think I’m being overdramatic. But it’s true, most days lately are not-so-good days and its a struggle.

Some days it is just easier to say I’m fine and nod. Other days I can’t bring myself to lie because I don’t have the physical or mental energy to. I say I’m struggling, in pain or that I don’t know how to answer it. And people always respond with, “I hope you feel better soon.” Again, it’s supposed to be nice and reassuring, but I feel more upset knowing that I won’t be all better soon. The whole conversation reinforces my concerns.

Hearing, “How are you?” reminds me that I’m struggling and when I don’t know how to answer, I feel pathetic. I don’t know whether to be honest with you or to “put on a brave face” when you ask me. I often want to scream out that I woke up this morning disappointed that I woke up. I want to tell you that every inch of me hurts and I don’t really know why. I want to tell you that I feel let down by the medical system. But I also don’t want to scare you or push you away with the negativity I give off when I’m struggling, because most days, honestly, wouldn’t be met with a positive answer to, “How are you?” I live with several chronic illnesses and health conditions, as well as mental health conditions. I’m, alive I guess. I’m not living, but I’m alive. I’m surviving, not thriving.

I appreciate you caring enough to ask, so I truly am sorry if I don’t know how to reply to, what should be, a sympathetic and simple question. I don’t always know how I’m doing myself, and that’s even harder to explain to someone else.

Many people living with mental and physical health conditions won’t mind being asked, “How are you?” but in case someone else out there feels the same as me, I want them to realize that others dread that question, too. Or aren’t sure how to answer.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on The Invisible Hypothyroidism.

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How a Conversation With My 'Grumpy' Nurse Changed How I See People

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I love the start of a new month. It’s like a new chapter of a book. It’s in many regards a blank canvas.

We might have some idea of what we’ll be doing in terms of work, appointments, planned events etc., but there are also many unknowns. Things we can’t anticipate or see, especially when living with chronic illness. I find, illness aside, the unexpected a little exciting. I look forward to every new month with anticipation. I always hope that something special, no matter how small, may happen.

Yes, OK, I am a glass half full kind of girl – but stay with me.

As I was musing about the things we can’t see ahead, I started thinking about many of the conversations on chronic illness support forums. One of our strongest themes is the desire of people with chronic illness, especially invisible illness, to be understood and believed. The conversations are often about how others, who we deem as “healthy,” have no idea of the pain someone with chronic illness deals with on a daily basis. Story after story highlights how invisible illness can so easily lead to misconceptions and hurtful misunderstandings.

In some cases we are probably right that others don’t understand what they haven’t experienced themselves, but are they being cruel for no “apparent” reason?

Let’s for a moment flip that thought on its head.

What if the grumpy person behind the coffee counter questioning why you don’t work or the person complaining that they wish they could lie in every morning like you do, actually were in pain too?

What if their pain was also invisible and they felt no one cared or understood them?

What if they were struggling with depression and grief over the loss of a loved one,or chronic fatigue?

What if they were undiagnosed and no one believed them and they felt resentment when they see others who were acknowledged for their struggles and pain?

What if they were experiencing domestic violence and felt helpless and hopeless? What if they were being harassed at work?

Every life, every person has their own story. It’s never simple. Even when people appear to have everything and have it all together, there will still be layers of untold stories.

I had a terrible grumpy nurse during one of my hospital stays. She felt more like a prison warden and she actually scared me. She was often on night duty, which made her seem scarier somehow.

On day three of my hospital stay, I decided I needed to stop being so anxious about her being on duty. That night she came into my ward in her gruff manner. She was taking my vitals and I decided to ask her how her day had been. I got a grunt type answer. I persevered and asked if she enjoy nursing. Well, that opened up her life story.

She loved nursing but she had just broken up with her husband. She was grieving so much. Her story was a complicated one. She was working double shifts to make ends meet and she was exhausted. I asked simple questions to keep the conversation going and she stayed sitting with me for 30 minutes as we chatted like old friends.

She had also had broken bones like me, but not as a result of a rare disease. She was so upset by my story, she wasn’t sure how to talk to me about my disease and my non-healing bones, which is why she had been so quiet over the previous days.

From that point on she would pop into my room every afternoon before her shift started to say hello and we would chat about how I was. But, more importantly, we’d chat about how she was. My scary prison warden had softened. She still looked a little frightening but she was a scarred, flawed person… just like me, just like you, needing someone to take the time to understand her needs.

If you are faced with animosity or misunderstanding from someone as you go about your daily life, stay calm and think about what might be going on in their lives. Ask them if they are OK.

It’s amazing how conversations between two strangers can evolve, full of genuine understanding, when we decide to turn our focus to caring for the other person.

By simply asking, “Are you OK?” when you feel someone is misunderstanding you, the real story behind the harsh comment might reveal a very real need, not dissimilar from your own.

Follow this journey on Medical Musings With Friends.

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What It's Like to Be a Sloth in a Land of Cheetahs

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I am a sloth in a land of cheetahs…

This is how I feel on most days. Especially those days where my brain just won’t make the connections and my body won’t perform how I would normally expect it to. Those days when simple words escape me and minutes pass as I attempt to form a sentence and get it past my lips.

Take yesterday morning. I was triggered, I felt my frustration reach a boiling point. “Normally,” I would throw on some shoes and go for a walk to clear my head. But yesterday, my body wouldn’t cooperate normally; each time I even attempted to find my shoes, my head would swim, the nausea would start to consume me and the fatigue pulled me back under.

On these days, I refer to myself as a sloth. But not just your average sloth… no, I’m the one that keeps falling off the freaking tree. The one with the wildly confused look on her face who is at least five steps behind both mentally and physically. Somewhere in the murky depths is clarity; somewhere in there is me. Some of the time, who am I kidding, a lot of the time, I can’t reach that far in, the energy just isn’t there anymore.

I’m not going to lie or sugarcoat this – it’s quite a scary place to be. I used to be the one my family relied on as the navigator. As a child, my mom would inevitably fall asleep if the car was moving, leaving me to be in charge of the map and getting us to our destination as efficiently and quickly as I could. We didn’t have GPS in those days so I would sit in the backseat of the car and scour the map for the best route and as a military pilot, there was no room for error with my dad… you did not get lost.

But lost is exactly how I feel now. Sometimes I can’t even remember where we parked the car. Sometimes I can’t remember what I am doing. Sometimes, I can’t remember what I am saying. How did this happen? Why did this happen? I am not old. When will it end? Will it end?

I went to Venice, Italy once on vacation. If you’ve ever been, you know how easy it is to get lost in the narrow maze of streets and canals. I have no idea why this happened, must have been my confidence? Too many random people to count would approach me on the street and ask me how to get to various places around the city: “I can’t figure this map out, do you know how to get here?” I felt like I had a sign that said, “Lost? Just ask me for directions!”

You can imagine then how disconcerting it was recently to move to a new state and feel completely and utterly lost just navigating to the local grocery store and home.

On these days, I watch the cheetahs from my beige vantage point, as they seemingly glide by, floating on a cloud of energy. I research solutions to my unsolvable puzzle until my brain hurts, then stare blankly at the wall hoping the buzzing in my head will stop long enough for sleep to finally take over.

The cheetahs fly past me, running back and circling me as I slowly move up the tree. On this day, I will not reach the next treetop. On this day, I will be lucky if I make it halfway up the tree. The cheetahs meanwhile have blazed trails across the land; fading dreams of past lives.

On these days, writing is out.

Can you just imagine a three-toed sloth attempting to peck at a keyboard?

Hours, sometimes days later, the words that were able to come out form nonsensical paragraphs that remind me of high school. My friend and I would pass paper back and forth; we would each write two words and by the end of it had a corny story that barely made sense.

I have always taken pride in my ability to think on my feet and get shit done. A problem solver from an early age managing a 200-acre farm by the age of 12, I moved across the country, raised two children, put myself through graduate school and ran several multi-million dollar companies. Now I can barely remember where I left my water bottle or whether or not I took my digestive enzymes.

This is truly a foreign feeling, this level of helplessness is beyond even the feeling of losing my mother at an early age. To have to rely on others to take care of my basic needs is a lesson in humility, patience and grace. Sometimes I am so weak I cannot stand in the shower, let alone wash my own damn hair. Let me tell you, it is very humbling to have to have someone wash your hair because you don’t have the energy to reach your hands up over your head.

Life from this view is different than anything else I could ever imagine it would be. The other day I sat and watched a snail slowly slime its way down a leaf, its whole body jiggling with the effort. Its little eye stocks moving from side to side, making sure the coast is clear. Incredible that these slow moving, fat little creatures, a lot like sloths, have survived on this planet for millions of years. You’d think something a little quicker would have wiped them out by now, but they keep going.

Sloths may take it slow, but the effort they give is definitely not wasted. Life as a sloth has taught me more than I can articulate in a thousand-word article. Probably the most important is that while I may not get to run with the cheetahs, I can still put one foot in front of the other carefully, and I will never, never give up.

This post originally appeared on Facebook.

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I May Not Be Dying, but My Illness Still Makes Me Scared

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I was dying.

Not in the “OMG that’s so funny, I’m dying” way, or the “every second we’re alive we’re closer to the time we’re going to die” way, either. I was “we’re not sure if she’ll make it to her next doctor appointment” dying.

I was terrified.

Now, I’m not dying. But I’m still scared.

I’m scared I won’t be able to set out and accomplish everything I had imagined for myself. I’m scared I’ll have to settle for something less than (less than what, I don’t know). I’m scared I’ll develop a new autoimmune disease or my gastroparesis will get worse or dysautonomia will leave me bed-bound, or a combination of all three.

I’m scared I’ll never get better than I am right now, in this very moment. Which, granted, is a hell of a lot better than where I started, but is still not good enough.

I’m scared I’ll never create meaningful relationships because I’m a burden. I’m scared my health will scare others away. And I’m scared it won’t but I think it will so I’ll push others away first.

I’m scared I’ll have to prove myself to every new doctor. I’m scared I won’t find a doctor who cares about finding the root cause and I’ll be stuck on a million different prescriptions for a million different things. I’m scared my medications will stop working.

I’m scared I am more scared than angry. At least anger can be turned into motivation. Fear is debilitating.

I am scared that I won’t be able to make it on my own and will be forced to move back home. And while that isn’t the worst thing in the world, I’m scared my parents would come to resent me for it.

I’m scared I have “peaked,” that at 23 years old I’ve done all of the cool things I’m going to do and it’s all downhill from here.

I’m scared I’ll have to stay overnight in a hospital.

I’m scared I will never get back my independence – that I will always have to rely on someone for something and they’ll resent me for it. And I’ll resent them as another symbol of what I am not.

If I’m being truly honest, I’m scared of getting better. I don’t know what that is anymore.

I’m scared of the maintenance that comes with being chronically ill. Remembering all of the medications and vitamins and supplements. Charting symptoms. Forced time to rest. Conserving energy like it’s a precious resource. The doctor appointments, the exercise limitations, the dietary restrictions longer than my arm. I’m scared I’m not up to the challenge. I’m scared I’ll have to do it for the rest of my life.

I’m scared no one really understands how hard it is to live in a body that doesn’t work. I’m scared that when I complain, I’m seen as overdramatic. And when I put on a smile and force myself to get through the day, people think I’m OK, I’m not sick.

I’m scared I won’t be taken seriously. That I’ll be judged for not “looking sick” when I really and truly am.

I’m scared to publish this post. And I’m scared if I don’t it’ll eat me up inside.

And so, I hit submit.

And I breathe.

And I hope.

And that is all I can do.

That has to be enough.

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Thinkstock photo via KatarzynaBialasiewicz.

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Dealing With the Social Impacts of Having an Invisible Illness

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While I have dealt with my chronic illness my whole life, I have only recently been diagnosed as having an illness. I grew up with a mother who had a chronic illness that was invisible, yet relentless in causing her pain. So, I have never really doubted anyone else who has struggled with an invisible illness. But, I find it funny that neither my family nor my doctors ever thought I could have my own invisible illness. It is no one’s “fault” that I was only diagnosed at 25 years old. It is just how it happened. But, in adulthood, I champion my own mother for being a strong influence on my own stance on caring for myself after my diagnosis.

 

Now, while I have been diagnosed as having a chronic illness, that doesn’t mean they have narrowed down exactly what that illness is. I have been lumped into the group of autoinflammatory illnesses and pegged as having something similar to PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis), a syndrome seen in children. At 29 years old, I like to joke that I have never fully grown up.

toy shark in a doctor's office

My illness, in general, is invisible. I get sick once a month and it usually manifests like the flu or another cold with a fever and inflammation. I am sure so many of us with invisible illnesses have had the experience of being made to feel like we are just lying to ourselves about the situation. I have been told many times I must be a hypochondriac and I am making things up about my health. But, blood tests don’t lie.

And some part of me wishes I could in some way prove my illness exists to everyone who slings those doubtful words my way.

My experience of having an invisible illness has felt so isolating at times. My condition means I am not always sick and sometimes I am just fatigued or even feel completely fine, depending on the day. I have been lucky to connect with a few friends and coworkers who also struggle with invisible illnesses. This connection has been an incredible lifesaver for me, along with websites of community like The Mighty.

Having an invisible illness is the hardest for me in a work environment. I fall into the category of being chronically ill, but still able to work. I feel lucky in that respect. But, for those of you who also fit into that category, I think there can be some challenges in the office environment.

I have been so lucky to have worked for some truly excellent and compassionate companies over the years. And I have been so thankful for the Family Medical Leave Act (FMLA). But, simultaneously, I have felt some pressure in the workplace to never be out sick and always give 200 percent, working late nights and giving my whole self to a job. But, I think it boils down to knowing your limitations. For me, I know an increase in stress, lack of sleep or lack of healthy meals will lead me to being knocked off my feet. I will be no good to anyone once I pass a certain point and self-care is incredibly important, especially to someone with a chronic condition.

Having an invisible illness has, at times, made it difficult to relay my limitations to my coworkers. In certain instances, I have shared the fact that I have a chronic illness with coworkers and have had varying reactions. The ones that sting the most are those who do not believe it and push back. Those who are supportive are amazing. But, those who have doubts tend to make the workplace seem isolating.

I wish I had wise words to share on how to make these situations better. I cannot say I am an expert on workplace politics and I truly believe each situation is different. I also believe that having an invisible illness does not have to be a negative in a workplace environment.

Now, I am a social worker. I have a strange knack for empathy and love to make connections wherever I go. But, when all else fails, I can remember I have my own community of people to fall back on here at The Mighty or through my online support group.

To all those who feel isolated by their invisible illness, remember there are many online communities available to connect. And if all else fails, you are more than welcome to get in touch with me. I may not be the coolest spoonie around, but I think I am pretty OK company.

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Thinkstock photo via Siri Stafford.

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Please Don't Love Me 'in Spite of' My Illness

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Please don’t love me in spite of my illness.

Between sick-lit, well-meaning friends and family, I have been told since my early years that I will find someone who loves me “even though I am sick.”

Even though I am sick and I will never fully get better. Even though I am sick and it is possible I will only get worse.

I wish I could go back to my pre-teen years. The years when I was just diagnosed and trying to process being sick alongside going through puberty and dating. I would go back and tell the younger version of myself that I am not less of a person for being sick.

 

I would tell young me that we don’t owe anyone anything – that we don’t need to be a martyr in our relationships because we don’t feel like we’re deserving of love. We are. Everyone deserves to be loved.

I would do what I could to convince that gawky girl, who didn’t understand why she required 12+ hours of sleep a day, that she isn’t a burden. I would go back to stop myself from dating boys who told me I was lazy and worthless.

“You are not your body,” I would say. “There are so many more things that make up the incredible creation that is you than this physical form.”

Call it a soul. Call it consciousness. Call it light.

Don’t love me in spite of my illness.

“In spite of” makes me feel less than – less than a woman, less than whole, less than enough.

“In spite of” sets a scale on the table where we both are weighed by the annoyances and grievances and deal-breakers of the other and my side is already tipping lower than yours.

With the disadvantage of illness, I’d have to work to make sure my good qualities, achievements and daily behavior compensate for an aspect of my person – that is entirely out of my control – enough that I become worthy of your love.

Will my fainting spells outweigh the fact that you chew your fingernails when you’re nervous?

Will all of my doctor visits weigh more on the relationship than your parents visiting?

Am I too much?

Don’t you dare love me in spite of my illness!

Love me for my mind, even when it’s foggy. Love me for my heart, even when my illness makes it beat too fast. Love me for my words, even when I can’t remember the one I meant.

I think people with chronic illness – as well as mental illness, who are disabled, etc. – are continuously fed tales in the media and in daily micro-aggressions about how we are a drain: on society, on the health care system and in our families.

We pretend to be healthier than we are because we run the risk of appearing too sick or not sick enough to present ourselves the way we do in public. We smile and say things are fine even when they are so obviously not fine. It is too easy for us to isolate ourselves from those who love us the most because we do not want to be the burden we are repeatedly told we are by society.

It took me years to realize why being told “I will be loved one day, in spite of my illness,” normally said by someone who truly meant well and whom I love, hurt so much.

It hurts because it tells me they do not see me as a whole person. They see me marred by disease and ultimately unworthy of the love I could/would be receiving if not for my illness. Any potential partner is then automatically relegated to “martyr” status for having the courage and strength to love me despite that giant fluorescent sign screaming “sick person” over my head.

So for all you well-meaning family members and friends who have said this to me: I still love you in spite of your incredible insensitivity to what amounts to just one aspect of who I am.

There is an English poet, David Whyte, who illustrates a concept he calls “the arrogance of belonging,” which Elizabeth (Liz) Gilbert discusses at length in a section of her nonfiction guide to creative living, “Magic Lessons.” I wanted to end this article with a quote from David Whyte that Liz referenced because hearing her talk about the arrogance of belonging switched a light on in me. I honestly believe everyone is worthy of love, and human connection and compassion should be the driving force of all of our lives. It is important we also extend that compassion to ourselves.

At the panel I was in the audience for, Liz posed a question along these lines to us, “Who do you think you are, in all of the history of humanity, that you feel that you deserve to suffer alone, separate from the rest of us, and are unworthy of being loved? The fear of not belonging is intrinsically human.”

We belong in this world. We are worthy of love that is not conditional on our health. We are already loved.

“…It’s interesting to think that no matter how far you are from yourself, no matter how exiled you feel from your contribution to the rest of the world or to society – that, as a human being, all you have to do is enumerate exactly the way you don’t feel at home in the world – to say exactly how you don’t belong – and the moment you’ve uttered the exact dimensionality of your exile, you’re already taking the path back to the way, back to the place you should be. You’re already on your way home.” – David Whyte

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