When You Ask ‘Why Me?’ About Your Chronic Illness

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We’ve all asked the question at some point. Why me? Why did I get rheumatoid arthritis (RA), juvenile arthritis, migraine, Crohn’s, psoriasis, etc.? It is an existential howl of despair into the darkness, asking that most fundamental of questions. Why did this happen to me?

Closely on the heels of that question follows the expanded version: What did I do? What didn’t I do? Is this some sort of punishment? Because as hard as that is, it’s the only thing that makes a certain sense in this new reality where nothing makes sense.

Is it punishment?

When you are in extreme pain, when your chronic illness prevents you from doing what you need to do, when you feel like death warmed over — that has to be a punishment, doesn’t it? When something feels like torture — and the pain of many chronic illnesses often do — it has to be as a result of being guilty of something, being judged, sentenced, punished. Doesn’t it?

Only those who have done something very bad indeed are sentenced to a lifetime of misery. Is this the result of a vengeful god getting up on the wrong side of the bed or, for the less religious among us, maybe you didn’t exercise, quit smoking, eat right or any one of the many things we are supposed to do but so often don’t?

The domino effect is not over. Because once you start thinking that maybe this is a punishment, the self-loathing is inevitable. It may not be at the forefront of your consciousness, but it’s there. It’s so easy to say that you shouldn’t think that way, but how can you not? You did something bad for which you’re being punished with a chronic illness, ipso facto it’s your fault. You did this to yourself. So you proceed to beat yourself up for anything and everything. It becomes a habit, and you add your own punishment to the pile already dumped upon you.

But here’s an interesting question to add to the list: why not me?

That’s not to say you or I did something very bad for which we must be punished, but rather that this is the twin to the other, the why and why-not conjoined from conception. They are the yin and yang to one another, swirling together, expanding and contracting, always the two.

Why not me? What makes me so special that I deserve to be spared this pain, this illness? With the underlying add-on of “someone else does not.”

And this pokes right at that other thing I didn’t mention yet. The sense of unfairness that comes after the why. Because that’s the whole sentence, isn’t it — why did this happen to me? It’s not fair!

When I (metaphorically) stomped my foot and exclaimed that there was nothing fair about being a teenager with juvenile arthritis and in a wheelchair, my father would ask, “Whoever promised you life would be fair?” It never failed to bring me out of my mood, to joke back that I distinctly remembered a fairy godmother standing over my crib and doing just that. Promising me that life would be fair.

Truth be told, we all expect that to some extent, don’t we? Perhaps not consciously, but when something happens, something big and life-altering, something not-good, it feels unfair. We try to be good people, try to live in such a way that we leave the world better than we found it. Does that not deserve the reward of fairness?

Except, contrary to the way we feel it should be, no one actually promised us life would be fair. Which gets back to the question of why not you?

Finding peace

After coming up on five decades of living with RA, I’ve gone through the gamut. I’ve asked all the questions and never received an answer. The why me doesn’t do me any good, but neither does the why not me. It took years, but I finally figured it out. Found the reason that this disease chose me.

Sh*t happens.

I apologize for the choice of word, but there really is no other way to say it. Sometimes, it just happens. Other than the science behind it, which is not comforting at all, there is no reason. It is not a punishment for your sins or a consequence of not eating enough broccoli.

It just is.

And that is almost impossible to comprehend. So let’s not try. Let us just accept. Because in acceptance of its perfect now-ness, its purity, lies the answer. I believe that leaving the agonizing quest for a reason behind, and accepting that sometimes — say it with me — sh*t happens, gives you the freedom to move forward.

Follow this journey on The Seated View.

Lead photo source: Thinkstock Images

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Dear Juvenile Arthritis Mamas

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Dear Juvenile Arthritis Mamas,

Thank you for welcoming me into your community, but can be honest? I don’t always feel like I fit in there.  

I’ve had arthritis more of my life than not, but I have no idea how to be a mom and navigate this lonely journey. I’m thankful for your unbelievably, tireless efforts to figure this out. Your kids, and mine, are better for it. Your kids, and mine, make me a better warrior. They’re watching, and I feel a great responsibility to show them how to fight their disease.  

Growing up with arthritis, I know the ups and downs and what it’s like to be a kid with this, but I wasn’t prepared for my own child’s pain. None of us are.

A few weeks ago after our last rheumatologist appointment, my daughter Ava and I were having lunch, silently, taking it all in. When we finished, she asked me somberly, “Mom, when is this going to be over? I’m sick of living in pain. I’m so tired of fighting. When am I going to be normal?”

My heart fell to my belly. We hugged and cried during lunch hour in the middle of Subway. I couldn’t honestly tell her it was going to be all right, and I sat wondering the same thing for myself and my own disease. It was my largest JA mom fail to date, but I know it won’t be the last.  

At the very least, I take comfort in showing her I’m human. I have loads of hope and faith, and they get me through each day, but I just couldn’t look her in the eyes and pass it on in that moment.  

You would have though. You would have rocked that moment and restored her hope. It’s not a competition; neither one of us are going to come out of this without scars.

What I can offer is some advice on being a kid with arthritis.

Let them be a kid as best you can. I know it’s scary to send them in the world with suppressed immune systems and sick little bodies, but do it anyway. They don’t want to be “the kid with arthritis;” they just want to be like their friends. Let them talk about it on their own timelines. They need to feel comfortable in their skin; arthritis is their normal. I know as mamas we probably overshare because it consumes us, but their friends might be their escape. Let them have that.

Teach them to advocate for themselves. You’re not always going to be there, and the real world doesn’t care that they have arthritis. Our kids have to know how to fend for themselves to get what they need. People may not always understand their disability because our kids may not meet their predetermined expectation of what sick should look and act like. Make sure they know how to answer those questions and help them realize it’s not personal. It’s not about them.  

Teach them that strength is not defined by their ability to not show fear. I get frustrated, sad and angry about this disease all the time. I’m human. Some days I don’t feel like fighting, so I don’t, but that doesn’t make me any less strong. I will get another chance tomorrow. Teach them to embrace their limitations; there’s strength in admitting their vulnerabilities.

Most important, love them through it just like you’re doing. Sometimes it’s a real drag to be sick, tired and full of pain all the time. We act like jerks and we don’t mean it. Bad behavior needs to be addressed, of course, but after that, love on them more.  

Their arthritis will make them kinder, gentler more compassionate human beings — I promise. They’re better because you’re fighting along with them. You’re doing a good job. Keep going, mamas. Your work matters.

Love,

A JA Warrior and Brokenhearted Mama

(Please note, dear mamas, I have no judgment of you. There are always exceptions and every kid is different.  I offer my best advice with the best of intentions. It may not fit you and that is OK.  You’re doing the best you can and I get that. Keep doing you; I support you.)

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19 Truths People With Arthritis Wish Others Understood

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Rheumatoid arthritis (RA) is one of the most common forms of inflammatory arthritis,  where the body begins to attack the tissues of the joints instead of germs, viruses and other foreign substances, according to the Arthritis Society. This results in joint damage, pain, stiffness.

RA often has few outwardly visible symptoms, which can make living with the challenges that come with it difficult for people to understand. So The Mighty worked with the Arthritis Society to ask our readers who live with rheumatoid arthritis what they wish others could understand about the condition.

This is what they had to say:

1. “You live in the moment not knowing what the next hour will bring you.” — Jacqueline Scott

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2. “Having rheumatoid arthritis (RA) is like riding a roller coaster — you don’t know until you wake up in the morning if you’re going to have a up day or a down day. I used to plan everything until I got RA, now my day all depends on how I wake up feeling.” — Lori Hummel Basile

3. “Having rheumatoid arthritis is a lifelong commitment [to] knowledge about your body. You work in partnership with your family doctor, your rheumatologist and your pharmacist in having a control of your health. You have to be able to forgive yourself days that you do absolutely nothing and on good days you can accomplish many things… Never let your condition get you so down in the dumps that you gave a hard time to crawl out. Support, support and support is totally crucial.” — Violet Roberts

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4. “I push myself daily and pay for it dearly. Just because I can run around a dog show ring a few times, or ride my horse, or bike or swim for an hour, all with the aid of my meds and a strong will, doesn’t mean I won’t be hobbling around later for it. But you’d never hear me complain, and if I did, I would be a 10 out of 10 on the pain scale, though you still never would guess from this stoic face.” — Lauren Meadows

5. “I’ve watched friends and family drop out of my life because of it.” — Gracie Soligo-go

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6. “I’m so thankful for the days that I feel good and just mind myself when I feel bad but try to find something that makes me smile in it all.” — Jacinta Dowling

7. “Since being diagnosed, I don’t recognize myself.” — Lisa Parker

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8. “Although I’m in remission, I still get lots of pain in my ankle when I’m on my feet for too long. RA has gone away for a bit, but it’s still left me with a reminder that maybe one day it will be back. With every ache I feel now, I worry that it’s back.” — Andrew Banister

9. “It’s a living hell, but I keep going for my family.” — Carole Learmonth

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10. “Most people don’t understand how painful arthritis is. Because they don’t see an injury they think you’re exaggerating how much pain you’re in.” — Stephen Scott

11. “It’s not just a disease for old people. Kids get it too.” — Deb Hannah

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12. “I hate this disease and how much it’s taken from me. Few people seem to understand this and have little concept of how much we suffer.” — Lynda Clarke

13. “It’s not limited to one joint. Or just joints at all. It’s debilitating and excruciating pain. It’s not in my thumb. It’s in every inch of my existence all the way down to my soul.” — Tammy Leigh

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14. “I wish my family understood how painful and how hard it is do to just everyday tasks.” — Shelly Slack

15. “RA is not the same as your sore foot or your sore back because you overdid it. RA is a life change .” — Savannah Badry

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16. “The fatigue and foggy head are the hardest parts to deal with for me, yet no one knows they exist.” — Emily Burnie

17. “My disease doesn’t have me nor does it define me… But I do have my bad days where I feel drained, depressed and in pain. I’ve learned to make the best of my bad days and to keep going. I’ve learned that exercise helps and that I can do whatever I put my mind to. I try my very best not to let this disease stop me from doing what I want.” — Montana Fazi

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18. “It’s a lonely life to live.” — Jacqs Turner

19. “No matter what, I still live my life, and I don’t let it beat me because it would be easy to be miserable but I’d rather be happy.” — Amanda Thurow

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*Answers have been edited and shortened. 

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Man in His 20s Shares Intense Photos of His Severe Arthritis

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Warning: Images below may be considered graphic. 

Dietrich Sölter has crippling arthritis. He is only 29 years old.

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Sölter, from Seattle, actually has two different types of arthritis: rheumatoid and psoriatic. And, in addition to the arthritis, Sölter has lupus, pustular psoriasis and a diffuse mixed connective tissue disease, according to his GoFundMe page. His lupus, an autoimmune disease, coupled with inaction by his former doctors has greatly worsened his arthritis.

man's hand swollen and bent due to arthritis
Via Dietrich Sölter’s GoFundMe page.

Sölter has severe, chronic pain in his fingers all the time and only has the use of his index finger and thumb on his left hand, which is the most affected. Many of his fingers have a boutonniere deformity, meaning the tendons won’t straighten and the fingers are bent forward.

man's fingers bent due to arthritis
Via Dietrich Sölter’s GoFundMe page.

Recently, he underwent surgery on his left hand. Most doctors he met with wanted to do a bone fusion procedure, which would reduce Sölter’s pain but would limit his use of his fingers. Since he wants to pursue a career in IT and has many hobbies that require the use of his hands, like motorcycle riding, Sölter decided against it. Instead, he found a doctor willing to do something called “digit widgets,” a procedure that utilizes tension caused by screws and splints to slowly straighten his joints.

Although his situation is rare, Sölter wants other people to know that arthritis doesn’t just happen to the elderly.

People should know that something like this can happen to a young, healthy person,” Sölter told BuzzFeed. “I don’t want to sound dreadful, but honestly, enjoy your life while you’re healthy because you never know if something like this can pop up and take a vast majority of the joy out of your life.” Sölter says that documenting his experiences through a blog has been incredibly helpful.

Sölter’s friend shared the graphic images of his hands after the surgery on Reddit.

See the photos in the gallery below:

 

Visit his GoFundMe Page to learn more and to make a donation to Sölter’s operation on his right hands.

h/t BuzzFeed

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What I Wouldn’t Have Achieved Without Chronic Illness

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Dear Chronic Illness,

We’ve not known each other long, dear, but you’ve insinuated yourself into every aspect of my life. In fact, there is not a part of my life that you’ve not touched, and I thought it was time I finally told you how I really feel about you.

My primary diagnoses are rheumatoid arthritis and narcolepsy, with secondary interstitial cystitis and irritable bowel syndrome. Our running joke is: One more diagnosis, and I’ll have my own alphabet soup (RA, IC, IBS)! I also experience depression, PTSD and anxiety, which have worsened since I started “getting sick.”

I resented you when you first showed up, chronic illness. And honestly? There are still times where I resent your presence and everything it means. I hate all the things you’ve stolen from me, but more importantly, all the happiness I’ve let you take. I despise the impact you’ve had on me, my relationships and my body.

But…

BUT.

Your arrival has changed my life in many positive ways, and for that, I must thank you. You’ve strengthened my relationship with my fiance, even while you’ve made life harder. Without your pushing your way into my life, I wouldn’t have found how strong I truly can be. I wouldn’t have met some of the most precious people I’ve ever known. I wouldn’t have followed my dreams.

I do hate how your presence means a revolving schedule of doctor appointments, medications, and sleepless nights. I don’t like our days spent curled up on the couch together or the times you keep me from my favorite activities.

But I have to admit I like how life has slowed down for me since you’ve been here. I am grateful for your forcing me to stop and smell the roses. Without you, I’d probably still be rushing about; now I know how to appreciate the quieter pace. When you came along and showed me how short and hard life can be, you taught me to treat every day as a gift, and I’ve tried very hard to do that.

Overall, I suppose I’m grateful for all you’ve taught me, though I wouldn’t say no if you wanted to take your leave. You’ve made me stronger and more compassionate, even while your pain feels as though it’s tearing me apart. The conundrum that is our relationship is both a blessing and a curse. And I suppose that’s the way it must be.

In closing, I must thank you for changing my life. For all the good, and yes, the bad as well. I suppose you’re now very much a part of me, and I don’t quite know what I’d do without you.

Keep on living, I guess.

A version of this post originally appeared on Becomin Neurotic.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or 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 “Share Your Story” page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Why I See My Rheumatoid Arthritis as a Blessing Even Through the Pain

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“Let’s hope it’s broken.” This strange response to my swollen hand left my mom and me confused. Granted, we were sitting in the doctor’s office of a well-respected hand surgeon. Could it be he was excited about the opportunity of doing surgery? But then why did he look so concerned? He really wanted my hand to be broken.

After a round of x-rays and a short wait, the doctor came back and recommended we see a rheumatologist. It was only a matter of time until we understood why he looked so anxious. Juvenile rheumatoid arthritis (JRA, also known as juvenile idiopathic arthritis) is something I wouldn’t wish on my enemy, and yet it has helped make me a stronger, deeper person than I would have been without it.

JRA is a form of rheumatoid arthritis (RA). The difference is that JRA occurs in babies, children and young adults, hence the name. The disease distorts your body’s thinking so that your immune system mistakenly identifies its own healthy cells and tissues as foreign and attacks those healthy cells and tissues that are often around the joints. Sometimes people outgrow JRA in their late teens, but that was not my case. I have now had it for over three decades. During that time, I’ve learned the value of adapting, encouraging, loving, risking, deep breathing and character.

I have gone through many surgeries (joint replacements and removals), changes of medications, joint drainings and the ever-appreciated cortisone and Kenalog (aka “feel good”) shots. This all sounds a bit daunting, but luckily I was raised by parents who always reminded me that “I am not an arthritic person. Rather, I am a person who happens to have arthritis.” This philosophy is a game-changer.

People are good at bemoaning a chronic illness, and I have done my fair share. I just try to do it privately. I have come to realize that being chronically ill is, in a sense, a blessing. This is a thinking that takes more effort on certain days, but its truth is always just a mind shift away and that is empowering with a disease that is so unpredictable.

I made it through elementary school without JRA, so I do realize what I am missing in a “normal” body, and I long for one every day. But that is not an option, so I move forward. Although choice #1 is no longer available, I have come to appreciate my reality. Living with RA (I no longer qualify for the “J” part, I’m told, as I am not a juvenile any longer — at least not age-wise), I have found strength in myself and my loved ones that buoys me.

When I was young and newly diagnosed, my nurse would tell me to imagine the place I most liked to be when I was about to have a joint draining to help prevent me from hyperventilating. I often still use that tool today when I have a flare or a particularly painful day. The amazing thing is now when I face such obstacles, I imagine being right where I am at this moment, surrounded by my husband who loves me, my dad who cheers for me, siblings who support me, friends who encourage me and the memory of my mom who walked alongside me from the start and imparted her lasting bravery within me.

Although I still may walk a bit too nervously into the future, I can now see some of the blessings JRA has afforded me. I just may need to open my eyes a little wider sometimes to catch that view.

Sharon Laine the mighty

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 “Share Your Story” page for more about our submission guidelines.

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