A Love Letter to the Illness That Gave Me Another Chance at Life

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The greatest gift my illness has given to me is serenity.

The chance to find it, and recognize when I need it, the value of it and to learn that it’s all I need.

And ever since then, it’s as if physiologically and mentally (spiritually for some) my body has a mechanism to remind me of when I’ve lost it, so I can get it back. That’s why I consider myself the luckiest person on earth, no matter the symptoms or the struggle. Because I have peace. The peace of knowing that tomorrow could be my last day, and that I’m truly OK with that.

It makes every day worth living more than they ever were before.

For some with chronic illnesses that are severely debilitating, to the point where we cannot manage the simplest day-to-day tasks, we may come to terms with the idea that we may never have a “life” as we knew it again. I face the death of the “self” — death of goals and dreams — I see the demise of my relationships and friendships, and everything I once understood about myself falls away. What’s left is the most basic form of myself — the relationship I have with me. There is nothing else when I lay in bed for the seventh month in a row staring at the same four walls. Nothing.

Then comes the depression. It’s the bottomless pit of hell that some people remark as “sadness” because they’ve never been there. In my case I also had a dose of diagnosed post-traumatic stress disorder to go along with it.

Then there are the innumerable additional challenges of being chronically unwell, which although universal, vary for individuals. Many chronically ill people suffer with the classic misunderstanding from others, all the way through to a complete a lack of empathy from even loved ones, to downright denial that our illness exists at all — again, even from loved ones. Their opinion of your health is how ill you are. Their say goes. They may tell you you’re not disabled enough for a parking permit or that you’re well enough go to work. Somehow, those who have never experienced a day of your pain are those who may think they know exactly how much you can manage.

The loneliness of the realization that some people who should love you — or have said they love you — actually don’t, was one of the hardest lessons, if not the hardest lesson for me to learn. We assume everyone will care about our loss of life. But I believe now that love is not guaranteed, and so I have learned to appreciate it when I really have it. And so now I will love like I’ve never loved before.

But I didn’t want to write about the challenges. While I’ve always wanted to write/blog about my journey through illness, I could never bring myself to. So, this is a love letter. Not a goodbye, not acceptance, not acknowledgement — a love letter. Because all that I’ve listed above has bought me to this point. A point where I can absorb illness into me, to my new “self,” and fall into a place of complete and eternal gratitude.

So, thank you. Without you I would continue to be blinkered, unaware, unsympathetic to what so many people in the world are struggling with. You have made me unapologetic and resilient. But most of all you’ve taught me my own self-worth, and no one will be able to take that away from me — something people search for their whole lives and look for in relationships, jobs, hobbies. I have it regardless of what I gain or lose in life. I do not walk around with self-doubt, anxiety or wondering “who I am” or “what I’m doing with my life.” You gave me the time and space to consider that. In a way, that’s giving me another chance at life — the chance to do it properly this time. To not waste time.

So, after climbing the mountain and seeing nothing but grey rockface in front of me, feeling the air getting thin with the altitude and finding it hard to breathe, and not being able to lift my limbs above my head from the pain knowing I have to, you finally said to me one simple thing: “Sink or swim.” I’ve reached the top now and I’ve seen the view.

It’s a view that was worth every moment of pain and bead of sweat.

Thank you for everything.

Thank you.

Follow this journey on Alainah Rook.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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'You Don't Look Sick': What to Say (and Not Say) to Someone With a Chronic Illness

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We all have certain lines or phrases that rattle us.

I cringe when someone prefaces with “I’m just saying…” or “No offense, but…”  To me, those words are signals, immediate clues warning me whatever the speaker is about to say, he or she knows I will probably not agree with it.

It’s the quickest way to put me on the defensive.

There are comments and questions about my health that just as quickly do the same. While I know the words are usually spoken with good intention, I struggle to maintain my filter.

It’s common for those with chronic illness to be more sensitive to stimulus – sounds, smells, lights, textures. Shopping areas, athletic events and restaurants overwhelm me. I experience everything with a tremendous intensity and become anxious and exhausted. Imagine all of the sights, smells and noises you hear in a full week smashed into the span of 15 minutes. It’s too much.

I’ve learned to avoid public areas as much as possible, but there are times when it’s unavoidable. Children require food, so grocery stores must be traversed. We are forced to adapt. Not just me, but my whole family. My daughters know they can’t yell or turn the television up too loud. My son knows the earbuds I wear during basketball games are to block out cheering and whistles.

Even our meal prepping is different. My husband enjoys making venison, slow cooking it with taco seasoning in a crockpot overnight. What once made my mouth water now propels me to our bathroom to vomit. I will wake from a dead sleep once the aroma hits our upstairs bedroom. As a resolution, the crockpot now simmers overnight in our storage building and is returned to the kitchen only when it’s ready to be transferred to a plastic container. This system took time and trial error, but it works for us.

Most chronic illness warriors bemoan similar experiences. It stands to reason that hypersensitivity extends to comments as well. We are not this way by intention. We adopt the sensitivity somewhere along our journey. We don’t want to be this way, sick and sensitive, but we are nonetheless.

Just as we with chronic illness make deliberate efforts to manage our physical sensitivities, we must also train our minds to hear those cringeworthy comments the way they were intended – as love and support.

I asked members of online support groups to identify the statements or questions about their illness that most bother them. Compiled from hundreds of reactions, some absolutely abhorrent, this is my Top 12 list. But this isn’t just the typical “What Not to Say to Someone With Chronic Illness” article. Sure, that’s part of it, but it’s also about learning how to hear our friends’ kind intentions in words that make us cringe.

For those with chronic illness, we must first acknowledge our own sensitivities. Only then can we figure out a way to re-hear a few of the most readily disturbing remarks. Rather than holding in hostility or insecurity, rather than filter-lessly responding to someone who is likely trying to be on your side, let’s resolve to find a better way to adapt.

For those trying to help a loved one with a chronic illness, this post is for you as well. I can almost guarantee you have spoken at least one of these lines. I’d also bet you thought you were being kind and helpful, trying to say something, anything, to make your loved one feel better. You might feel lost; after all, if doctors can’t fix your friend, how can you? Right?

I hope this will help you reexamine the words you have used and learn better methods of support for those with chronic illness. Trust me. Your loved one needs you now more than ever, even if she doesn’t return your phone calls, cancels plans with you often, and only seems to want to discuss her illness. We all desire connection.

With each frustrating line, an explanation and a more useful approach is suggested for friends of chronic illness warriors. Inevitably, frustrating lines will not be eradicated overnight. Chronic illness warriors must adapt to maintain friendships. Read these “instead” lines repeatedly. Train yourself to automatically hear the frustrating line as the more purposeful one. Yes, it’s tough, but it’s not as difficult as isolating yourself from those who love you.

Are you ready?  Here we go.

1. You don’t look sick.

Intended as a compliment, these words actually hit on our biggest insecurity. Because our illness is invisible, we are terrified that people do not believe we are really sick. We’ve seen doctors who question our diagnosis, even in the face of positive test results. When a friend tries to tell us we look good, we hear that we don’t look sick enough to be sick. We hear speculation instead of support.

Instead:  You look great, but are you feeling as good as you look?

This allows you to express your opinion that the Chronic Illness Warrior appears better than the last time you saw her, and it acknowledges your understanding she is likely experiencing invisible symptoms, such as pain and nausea. It creates a warm space for safe, meaningful conversation.

2. You’re canceling on me again?

Let me state this clearly. We do not want to be alone. We crave the same connection as everyone else. When we wake up feeling crappy and realize we aren’t physically able to keep a commitment, we are disappointed and angry. We feel guilty for canceling yet another date. We worry our friends will eventually stop reaching out to us. We hate being unreliable. As frustrating as it may be for you, our friend, it is just one more event our illness has stolen from us.

Instead: Let’s plan to  ___ on Friday, but don’t feel badly if you have to cancel. I understand the degree of your symptoms changes day to day.

We will still despise canceling, but if a friend extends this kindness and understanding from the get-go, there is less pressure for us to push ourselves when we should be resting. We know it is hard for outsiders to fathom the day-to-day, sometimes hour-to-hour, symptom changes of our illness. Heck, we deal with this every single day, and we still aren’t used to it!

The bottom line… please keep making plans with us, and please continue to understand when our body betrays us and we are forced to cancel. It really does hurt us even more than it hurts you.

3. I know how you feel.

This is acceptable if you suffer from the same illness as me, but even then, chronic illnesses, especially those considered auto-immune disorders, affect people differently. We are each designed uniquely; therefore, our bodies react divergently to illnesses. No two people experience Lyme disease exactly the same way. Although there is some comfort in knowing we are not alone, that others have travelled this road and survived, hearing “I know how you feel” from a healthy friend is not helpful.

Instead: Help me understand your illness.

We want to be validated and understood. We want to be able to discuss our illness and treatment with our friends. After all, this is a significant part of our lives now. To avoid conversation about our illness is equivalent to avoiding topics integral to who we are, like our children or our career. Take some time to research our chronic illness. Let us know you are making an effort to grasp our struggles. It will mean more than you could ever imagine.

chronic illness meme: just as we with chronic illness make deliberate efforts to manage our physical sensitivities, we must also train our minds to hear cringe-worthy comments the way they were intended -- as love and support

4. If you need anything, let me know.

This is probably the most overused line in the world of grief. I’ve said it. I bet you’ve said it. And I would also bet when we said it, we meant it 100 percent. Here’s the problem. It’s too broad for the chronically ill to process.

Instead: I’m going to ____. Do you need anything?

We are working hard just to walk or breathe or sleep. We are keeping track of complicated medication and supplement schedules. We are in too much pain to get quality sleep. We are so stinkin’ tired. We need help; we’re just too darn sick to articulate it. We may not even know how you can help. Delegating feels like just one more decision in our already complicated life.

However, if you share that you are going to Target to pick up dance tights for your daughter and ask if I’d like for you to pick a pair up for my little dancer, that answer I can manage. Knowing you are going there anyway makes me feel like I’m not inconveniencing you. It’s hard for me to ask for help, especially in the general sense, but if you make a specific offer, I’ll probably take you up on it.

We all need a little help.

5. At least it’s not [fill in another horrible disease here].

The most popular fill-in-the-blank for me has been “cancer.” Please don’t say this. Do not compare illnesses. We all have or will have experienced our own personal grief, and at the time, they are each tragic in their own right. Saying the chronic illness warrior should be thankful because she is theoretically less sick than someone with cancer is like saying we shouldn’t be happy because someone else is more happy. Comparisons are not cool.

Instead: Do you feel like you’ve made progress since you were first diagnosed?

The only time comparisons might be OK is when we compare where we are now in this illness and our treatment to where we were when we first got sick. This simple question, or if applicable, “I’m amazed at how far you’ve come,” lets the warrior know you understand it has been a tough road.

6. If only I could be sure your health would be OK by [fill in the date here].

Twice now I have heard this exact line in my professional career, and it’s the ultimate dagger to what little pride I had left. After devoting 15 years to the education of high school students in what became my hometown, these were the words I heard from my superintendent. Recently I heard the same words during a discussion about a potential part-time job opening. Both moments brought angry tears to my eyes. I am well aware of my illness; I do not need anyone else to tell me I may not feel well enough to return to work. I grapple with that fear every single day.

Instead: None of us can be sure we’ll be healthy tomorrow.

The reality few want to acknowledge is tomorrow is not guaranteed for any of us. You could have a stroke this evening at your dinner table. You could suffer a heart attack while driving to work. You could be bitten by deer tick on your wedding day. The total randomness of those whose lives are turned upside down by sickness often scares the crap out of those watching from the sideline. I understand the risk taken by hiring me. I really do. But I wouldn’t apply if I didn’t believe in my abilities. Give me a chance. If I fail, no one will be more devastated than me. Unlike most employees, I know the value of health, profession and purpose.  My open eyes make me a tremendous asset.

7. You can beat this! You’ll be back to normal in no time.

As difficult as this is to admit, this is my new normal. I will never again be the person I was before my heart stopped working properly and Lyme ravaged my body. I have experienced pain worse than childbirth, the demoralization of depending on my husband to wash my hair, my own embarrassment in requiring a wheelchair. The odds of my body returning to 100 percent are very, very slim. But even if by some miracle, I were completely healed, I still could not be me.

For that, I am actually thankful. I see life with more empathy and understanding. I’ve slowed down enough to see the beauty all around me. I’ve met people who inspire me daily.

I’m so far from normal, I’m not sure I even know what that is.

Instead:  We got this.

Very simple, yet profound. You’re letting the chronic illness warrior know she is strong, and the “we” indicates you are going to help her through this journey. That means the world to us. The illness has taken so much from us already; we want to maintain friendships, especially ones with sympathetic ears. We can’t beat this illness… that’s why it’s called “chronic.” But with the love of our family and friends and with excellent medical care, we can get ahead of it and find joy in our lives again.

8. My [fill in title, i.e. uncle, friend, teacher, sister-in-law’s third cousin twice removed] had the same illness you have, but he’s fine now.

I knew nothing about Lyme disease until I was diagnosed with it. Now, it seems everywhere we go – restaurants, kids’ birthday parties, in or out of state – someone tells us they know so-and-so who has or had Lyme. In some ways, it’s comforting to know I’m not the only one. But there’s two downsides to this. I either get to hear the individual is “all better,” which means he likely received the antibiotic treatment immediately after the bite, or I get to hear the person is bedridden or psychotic.

People, this line is not a ray of optimism.

Instead:  You want to hear a funny story?

Yes, yes, yes! We sure do. The day-in, day-out business of fighting our chronic illness makes us crave bits and pieces of the real world. Share your funny stories. Tell us about the time your son told the dentist that Mommy and Daddy “do the f-word all the time.” (True story… but the f-word was “fart.”)

Help us out of our funks. Bring us back to the land of the living. Talk with us about everyday stuff. Tell me about the silly thing your child did. Listen to me as we weigh the odds of a new treatment plan.

Be present. That’s really all we want.

9. Should you be eating that?

Those with chronic illness, particularly autoimmune disorders, will quickly discover the power of food in their path to wellness. I am now living gluten, dairy and sugar-free, and my symptoms are much more manageable. Is it hard to say no to homemade bread or chocolate cake? Sure, sometimes. But most of the time, I remember how horrible it was to be unable to walk. It was my diet and supplements that got me out of that wheelchair. The bottom line is nothing tastes as good as healthy feels.

With that in mind, nothing is more frustrating than for a person who is the poster child for bad habits, from drinking soda all day to puffing cigarettes whenever possible, to give me suggestions on my what I should be eating.

Instead: I’m impressed with your dedication to your diet. What do you think has made the biggest impact on your symptoms?

This lets us know you recognize the difficulties we face with each meal, and it give us room for an important conversation. I won’t preach my nutritional beliefs at you, but perhaps something will stick. Regardless, we can have a healthy dialogue, which allows us to understand one another better.

10. I wish I could stay home all the time.

It would be much easier to stay home all day if we had a live-in housekeeper and cook, but we don’t. When we are home, we hate ourselves for our inability to do what once was the simplest most mundane tasks. We feel lazy and worthless. We worry about the burden we are unintentionally putting on our families. There are days when walking upstairs takes all I have in me. I wonder, How is this my life? One day I was jogging 10 miles and the next I was in the cardiac unit at the local hospital. It is such a difficult concept for us. Please don’t belittle our situation by saying you wish you were homebound.

Instead: It must be hard to go from such an active life to one with so many limitations.

This acknowledges your understanding that we haven’t always been this way. We don’t want to be home all day. We miss our active lifestyle. Saying it this way give us ownership of these changes and helps silence the little voice in our heads saying lazy or wimp or worthless.

11. God never gives us more than we can handle.

If you’ve ever had a loved one die by suicide, you know firsthand how ridiculous that statement is. If God had never given my cousin Mike more than he could handle, Mike wouldn’t have been buried under a 21 Gun Salute. Life was too much for him to handle. When his brother had to carry on without him, the weight of it all buried him as well. God, or Someone, gave them more than they could handle.

Did you know it’s estimated that nearly a third of people with Lyme disease attempt suicide? As patients feel alone and hopeless, suicidal thoughts often overwhelm them. They’d do anything to stop the pain.

Instead: I miss you. Would you like company, or do you need to rest? Should I call you or text? What works best for you in your healing right now?

I cannot stress this enough. We do not want to be alone. We seek connections but are often unable to create them on our own. We’re too tired. Our brains are too foggy. We need you to take charge and take that step. Show up at our house with a meal for our kiddos. Ask about our diet and try to make something to accommodate it. Text us. Call us. Visit us. We may be putting on show on the outside while on the inside considering how much better off the world would be without us.

12. You’re so skinny.

I’ve written about this before, but it or a version of it was one of the most-shared lines in dozens of online support groups. You’re wasting away. Gosh, you’ve gained so much weight. Are you pregnant?

It’s best practice not to reference a woman’s size. You don’t know what battle she is fighting. Overweight or underweight, women are sensitive, especially when we feel like our bodies are betraying us.

Instead… I got nothing. Just don’t comment on weight. Period.

There were hundreds of comments. I’ve whittled them down to the Top 12. Some were remarkably horrid. It’s all in your head. Just exercise more and you’ll feel better. You don’t deserve to have your kids anymore. I can’t handle your sickness anymore; our marriage is over. If you think positive, you’ll be healed. And the list goes on and on…

If you love someone with a chronic illness, please continue loving them through this, the toughest time in their lives. Be patient and forgiving. Remember the littlest thing will make our day. Try to phrase your words in a kind way.

If you are the individual with a chronic illness, pay attention to your own sensitivity levels. Trust that the speaker means well and only wants the best for you. Train your mind to rehear particularly sensitive lines. Accept help. You are worth it.

You matter.

Every. Single. Day.

There is purpose in chronic illness, for both the warrior and the friend of the warrior. Seek your purpose. There will always be goodness in the ugly if look for it.

Please keep sharing this posts so more and more people will be aware of the kind of words we need to hear.

Keep coloring, my friends.

Follow this journey on A Broken Crayon.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why Saying 'It Could Be Worse' Doesn't Help Me Feel Better About My Illness

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All of us have faced adversity in our lives. Whether it’s the death of someone close to us, a battle with a disease, bullying, or anything else, we all know what it’s like on some level to go through something difficult.

The thing is, we’re all special snowflakes here, so the problems we face are different. And even if they’re really similar, they’re still different because we as human beings experience emotion differently. The way you cope with the death of a family member may be entirely different than the way your best friend does.

And when people are facing hardships, it’s hard to know what to say. But here’s one thing I would actively advise not saying to someone going through a tough time:

“It could be worse.”

“It could be worse” is my biggest pet peeve when it comes to attempting to “comfort” someone. Of course it could be worse! A bomb could drop and kill all of us except the cockroaches! Paris Hilton could decide to start releasing music again! It could always be worse! You might as well say “the sky is blue” for all the new profound light you’re shedding on the situation.

Which is why I firmly believe “It could be worse” is a lazy thing to say — you’re not empathizing, you’re just making the person feel guiltier for the emotions they’re experiencing. That person might now think, “Yeah, it could be worse. So why do I still feel so sh*tty?” This just leads to a whirlwind of guilt over how we should feel versus how we actually feel. See? Not helpful.

I’m also guilty of thinking “It could be worse” in my own mind when I’m having a tough pain day or life just feels like a bit too much. You think it might make you feel better to put your problems in perspective — like, at least my life is probably better than Jeb Bush’s? But comparing the hardships in my life to someone else’s doesn’t make my chronic joint pain go away. It doesn’t make financial troubles disappear. It doesn’t bring anyone back from the dead.

So maybe next time you’re thinking of your own problems in comparison to others, do what Joey from “Full House” would want you to do and cut it out. Berating yourself for your emotions because someone else out there has it worse is not only silly and counterproductive, it’s potentially just bad for your own mental health. Life is not the Olympics of Suffering, and you don’t get a medal for having the worst problems of all, so maybe just let your problems exist as they are and don’t try to categorize or rank them.

And when it comes to chronic illness, I think it’s OK to be mad. It’s OK to feel like it’s not fair. It’s OK to feel like my bad day is bad, even if someone else’s bad day is worse. Sometimes the most cathartic thing I can do for myself is feeling what I feel, when I feel it, without piling on the guilt.

Follow this journey on Sicker Than Your Average.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

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To My Loved Ones Who Can't See the Pain I Feel Inside

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People just can’t see it. I am shouting inside but silent on the outside. I want to run away, escape or just return to who I was before everything happened.

I don’t know what to do to make my family feel better. Knowing they are suffering because of me creates a burden to me. They just keep telling me, “Be strong, you can make a bigger effort.” But the problem is that they just don’t understand that isn’t always possible.

Yes, I am angry at what I am going through. I am 17 and I have a chronic illness that will be beside me for the rest of my days. I am scared of the future, because I know it won’t be the way I imagined it would be before everything happened. I used to dream about the future, and now I just dream of having a second without pain.

It’s very hard feeling pain 24/7. You are always exhausted and you can’t recharge your energy. I feel like I was burned, pinched, stabbed, cut, that painful feeling when you have your hand in a bucket of ice and more. I never thought it would be so hard doing all my daily activities. Today I just thought of laying in bed because it’s just too much.

I keep fighting for all my loved ones even if they don’t understand at all what I am feeling. I know they will always be there for me, but sometimes I wish they didn’t know me so they didn’t have to go through this. They don’t deserve it.

Nobody deserves living with this or other diseases, but I believe everything happens for a reason. And people going through this are stronger and learn to appreciate life pain-free.

If you are a patient, know you can do this and that you have to live through this because you can get over it. If you are family, don’t be hard on him or her, just be there with them and try to do something to make them feel better, not worse (because it’s very easy for that to happen — even if what you are saying has the best intentions, be careful). If you are a friend, be there for him or her and never leave him or her, even if they ask you to or it starts to get difficult, because they will always need you, even if they don’t say it out loud.

Having someone you can count on is the best thing. It helps us get through this easier, so please never leave.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

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The Secret Power of Tattoos When Chronic Illness Controls My Body

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I like getting tattoos.

Other things I enjoy include piercings, dying my hair colors not found in nature, and spending far too much of my disposable income on whatever makeup a Kardashian is currently peddling on Instagram.

So what, am I having a late-in-life rebellion against my parents? Do I just like my hair to look like sherbet because I’m really hungry?

I’ve thought long and hard about why I like to make my body physically fun-looking in unconventional ways, and the best answer I can come up with is control. Control is a really un-fun sounding word, but to me it’s an exciting concept.

Chronic illness means rarely having control over your own body. It means you can be trucking along in life, doing everything your doctors ask, and you may still encounter a storm of symptoms at a moment’s notice. It can make me feel pretty powerless —  everybody wants to talk about how “your body is your temple,” but what happens when your temple is tearing itself down for no good reason?! Screw this temple, honestly. I got a broken temple.

So how do you take back your own body? That’s where body modification comes in. There are a lot of different levels to body modification — everything from ear piercing to full body tattoos are included. For some people, it’s a whole lifestyle. I’m a pretty small-grade practitioner of it myself; I only have a couple of piercings and a few tattoos. But throughout history, whether you have a sleeve, or gages, or fuchsia eyebrows, I believe body mod has meant something kind of cool: self-empowerment.

young woman sitting in tattoo parlor getting a tattoo on her arm
Samantha getting a tattoo.

If I can’t control the chaos going on inside my temple, there’s something empowering about being able to decorate it as I please. It’s also nice on an infusion day or a trip to get blood work done to look down and see the tattoos I’ve chosen looking back at me. When I was a little kid and I was having a bad day, my mom would draw a smiley face on my index finger as a reminder at school that things would be OK. My tattoos feel like the big-time version of those little smiley faces drawn in pen.

And when I’ve been bedridden or housebound with a flare for a while, something like turquoise hair can make me feel like a glamorous unicorn in a way nothing else quite manages. It’s a great (and slightly less permanent) way to take charge of putting a smile on my own face. And while makeup doesn’t quite fall into the category of modifying your body in any permanent sense, I tend to include it in the category of aesthetic changes that lift my mood. Trying a new spidery eyelash trick or a bright purple lipstick can make me feel newly human on the outside even when my inside is like “Meh, ow, take a nap.”

So if you have a chronic illness of your very own, might I suggest treating yourself to a new foundation that makes you look more glowy than you feel? A box dye can turn you into a Rainbow Brite fairy princess. Try whatever trend makes you happy. Because in the grand scheme of control over your body, you’ve got to take it where you can get it. I may go to bed at 8 p.m. tonight, but at least I’ll do it with sparkly new nail polish on, and that was enough to make me feel like me today.

Follow this journey on Sicker Than Your Average.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Compare My Life With Invisible Illness to What I 'Should' Be Doing

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Earlier this week was the Boston Marathon. I know more than one person who successfully ran the race. I am amazed because running this race means that not only have they run marathons before and survived them, but they’ve actually gotten good at it. When I clicked through their pictures, and in general when I click through pictures of friends my age who do incredible things like finish these races or climb great mountains, a few things go through my head: First, I am so happy for them. If I’m particularly close to them, I also feel proud of them. Slowly, though, the comparisons start to creep in. I start to think about what I “should” be doing at my age. I can’t help but think about the fact that people I know are running marathons while the idea of running any distance is laughable for me at this point in my life.

I know it’s not atypical to draw comparisons between yourself and others. I know from working in education that it’s human to compare your children or other loved ones to others their age. I know from personal experience that the urge to draw this kind of comparison may be strong when you have a disability and want to know what’s “normal.”

Making comparisons can be damaging, though. It can hurt. Even making comparisons to others with the same disability can be dangerous. Of course, people with all sorts of disabilities do stunning things like run marathons, climb mountains and become CEOs. But let me tell you a secret: They do these things because they are people, and people do amazing things. They don’t do them “despite” their disability.

woman standing in ocean looking at horizon
Sara looking for shells at the beach — something she excels at and is grateful to be able to do.

So if, like me, you ever feel the urge to compare yourself to others around you and think about the things you “should” be doing, do yourself a favor and stop. Everyone is running marathons and climbing mountains all the time. I say this not to take away from the accomplishments of all those who are literally doing these things, but to bring light to those whose obstacles are different. Just because my mountain is getting through the work day, and my marathon is living with an invisible illness that brings constant pain, that doesn’t make my victories less valid than others’. It doesn’t make your victories less valid, either.

I may not have run in Boston this week, but I, too, have become skilled at doing hard things with grace. I bet you have, too. Screw “normal,” and be proud.

Follow this journey on ZebraWrites.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

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