19 Truths People With Arthritis Wish Others Understood


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 with arthritis smiling

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


Warning: Images below may be considered graphic. 

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

man smiling

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

What I Wouldn’t Have Achieved Without Chronic Illness


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 community@themighty.com. 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

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


“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 community@themighty.com. 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.

Photographer Captures Reality of His Dad’s Alzheimer’s in Striking Series


For Mark Seymour, photography is more than just a profession or passion. It helped him cope with his father’s last few years of life.

When his dad, Ronnie Seymour, was diagnosed with Alzheimer’s disease five years ago, what had begun as Mark Seymour photographing his parents’ daily lives turned into a way to face and document his father’s experience with dementia. The result was a four-year photo series, “Remember Me,” (below), as well as a short film, “A Portrait of Ronnie.”

“[It was]… a difficult and painful project but something I felt compelled to do, bringing meaning not just to us as a family but so I could take something positive from this situation and use it to help raise the awareness of… what dementia does to a person and their family,” Seymour wrote on his Kickstarter campaign page.

Ronnie and his wife Winnie in February 2014
Ronnie playing the harmonica in May 2014
Ronnie a month before he passed away

Ronnie Seymour passed away in March 2015, but his legacy now lives on through his son’s black and white photographs. The photos (full series below) show Seymour’s disease’s progression, from his diagnosis to moving into a local care home, to his death this year.

“Taking the pictures was relatively easy,” Mark Seymour told The Mighty in an email. “The tears came at the editing stage, when confronted by [the photos] on my screen.”

Seymour’s photographs will be displayed at an exhibition in London this September that will coincide with World Alzheimer’s Month. Afterwards, he hopes to take his exhibition to local and regional areas. He told The Mighty he wants to give people “an awareness of what Alzheimer’s is really like and what stages the patient goes through.”

To see the story in pictures watch the video below:

 

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8 Ways to Ask (and Not Ask) About Why I Look Different


A friend recently asked me, “Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease (scleroderma)?” I’ve gotta say, it’s a stumper! Humans are curious creatures. It’s natural and healthy to wonder why people vary from the norm either in appearance or behavior.

I will attempt to answer this tricky question, but before I do, I must first give you a sampling of how I do not want people to approach the topic with me.

1. Blurting out, “What’s wrong with you?” or spontaneously asking, “Why are you sooooo skinny?”

Don’t go up to strangers and ask them personal questions about their appearance. It’s weird when some random patron at the grocery store stares at my splotchy, mangled hands as we examine the produce and says, “What’s wrong with your hands?” This person is not invested in my well-being. Their inquiry is blunt and off-putting. My fantasy response is, “I’m allergic to weird strangers who ask me intrusive questions.”

2. Exclaiming, “Congratulations! Do you know if you’re having a boy or a girl?” 

I have super skinny arms and legs but a disproportionally large mid-section. Possible contributing factors are: the aftermath of eight major abdominal surgeries, distention caused by scleroderma, my ostomy bag inflating, or my affinity for donuts and total lack of willpower.

3. Asking, “Are you a witch?”

4. Pretending to not notice I look different when meeting me, but determined not to pursue a friendship with me because I’m weird-looking.

It’s much easier to make a list of what not-to-do than to advise on the best way to handle this delicate situation. Through deep consideration, I devised the following guidelines:

1. Get to know me first.

If you meet someone in a social situation and get to know them as a person, then I think it is perfectly normal to ask them a few questions about his/her altered appearance. I recommend framing your conversation in the context of genuinely wanting to get to know them better.

2. Ease the blow.

It’s best to compliment someone first by saying, “You have gorgeous eyes, but what’s wrong with the rest of your face?” You’ve gotta soften the blow a little.

3. If I give you a clue, take it.

I try to give people overt clues about my disease. This saves us both a lot of awkward dancing. I have a magnet on my car that says “Cure Scleroderma.” When I go swimming, I always wear a Scleroderma Walk tee-shirt over my bathing suit. The silver lining in not being able to wear a cute bikini is that my tee shirts allow me to raise awareness for scleroderma, conceal my purple and red spots, allow people who meet me to immediately know what I have and go home and Google it if they so desire.

4. Emulate this third-grader.

I can think of no better way to describe how to approach me about my appearance than an interaction I had with a third-grader just this past fall. I had been working with this boy in a small group for several weeks. While dismissing the group, we had the following brief interaction:

Third-grader: Mrs. H, you’re beautiful! I mean really really beautiful! Honestly, you’re so beautiful, but I’ve been wondering, why are your wrists sooooo skinny?

Me: That’s a great question and I must tell you I am so impressed with the way you asked it! I know I look different, right? So here’s the deal: I have a problem with my skin that makes it much tighter than most people’s. That’s why my wrists look so skinny. My skin doesn’t stretch as much as it should. Does that make sense?

Third-grader: Yes. Does it hurt?

Me: Sometimes, but I’m really used to it so it doesn’t bother me so much.

Third-grader:  Oh. Like I said, you are really really beautiful, Mrs. H.

Mind blown! This third-grader just masterfully steered his way through a complicated question most adults are uncomfortable asking. He followed my prescribed guidelines to perfection:

-He waited several weeks and got to know me before asking me a personal question.

-He expressed interest in my well-being.

I must admit that I still don’t openly discuss my altered appearance with my kiddos. When a child asks, I answer with honesty, but I don’t bring it up. If I were truly fearless, I would ask my district if they would allow me to lead an assembly on “Embracing Our Differences.” I would boldly get up in front of the 600 students in my school and share my experiences in an age-appropriate presentation. I truly believe this would help our kids navigate these difficult issues that many of them face. Most cruel behavior stems from misunderstanding the differences that exist between us.

I would like all you readers out there to weigh in on this. I especially would love to hear from fellow teachers, former students and parents. Please take a moment to make a comment below.

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