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6 Things I Need 'Normal' People to Learn About My Chronic Illness

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I don’t know exactly how or why I developed a chronic illness, but I did.

Somehow I went from a college kid living my life to a 31-year-old woman with knee replacements now living the bionic life.

I have learned to accept my disease and how my life is. The fact of the matter is, I actually love my life.

At this point, I don’t have a problem with my disease.

It’s “normal,” or healthy, people who seem to have more of a problem with it than I do.

1. This is my normal.

I have a health situation that will always inhibit me from doing things like “normal.”

I will always question if I should Uber or walk because I’m not sure if my legs will cooperate.

I will always be conscious of my diet choices and alcohol consumption to ensure I don’t set off a flare.

I will always have to visit a doctor, participate in lifelong physical therapy, take meds or have IVs and always make conscious efforts to stay ahead of my disease.

However, I can’t constantly look at my condition as an obstacle.

To ensure that I am living my life as “normal” as possible, I simply need to make modifications to my lifestyle that best suits me and my disease.

2. Your health advice is (respectfully) BS.

Unless you are a healthcare professional with accurate information regarding my illness, or you are powerful healing shaman that can take away my disease with a simple touch (please email me if you can do this), you have no business offering any health advice.

I appreciate your eagerness to help, but respectfully, stop.

Any mainstream supplement, diet, treatment, prayer, affirmation or drug, I have already tried or considered.

A note to multi-level marketing (MLM) sales peeps: Most products you’re selling consist of fake nutrition laced with soy, sugar, and chemical bi-product. Just because you bought a “welcome kit” and watched some info videos doesn’t mean you know how to ease inflammation. In fact, I’m personally offended you think my struggle is a business opportunity.

I have very specific drug, diet, and lifestyle protocols implemented that are tailored to my genetics and disease, so that pill you saw at GNC with “joint support” doesn’t apply.

3. I’m not too young.

Autoimmune disease affects upwards of 50 million Americans.

It does not discriminate by age, race or gender.

An autoimmune disease is when your immune system can’t tell the difference between foreign invaders and it’s tissues. As a result, those that have autoimmune issues present different symptoms depending on their diagnosis.

In my case, I have arthritis in my joints. Arthritis is often labeled an “old people” disease; however, anyone at any time can get it.

4. Stop calling me out.

For the last 12 years, I have been battling pain and inflammation in my entire body. My knees are the biggest problem area. Over time, my knee joints developed deformities and as a result left me with a sickkkkk pimp walk (I kid…but I have a little limp even with knee replacements).

I can’t for the life of me understand how “normal” strangers over the course of 12 years, at least once a day, have come right up to me and asked, “Why do you walk that way?”

Thousands of times (not exaggerating), I have been approached with the question, “What’s the matter with you?” or “What happened?”

Seriously? I appreciate the concern, but it’s none of your f*ing business.

5. I’m not a flake.

I love spending time with my friends, drinking some whiskey and gorging on tacos just like anyone with interests outside of Netflix.

The problem is, I simply can’t sometimes.

Sometimes my disease forces me to stay home. It’s either I am in pain, or I am exhausted, and there’s not a damn thing I can do about it.

Trust me, I’d rather be out watching the Denver Broncos be SuperBowl champs, or catching the latest Leo movie. It is what it is.

It is what it is.

woman doing exercises for physical therapy in the pool
Mandy doing her pool therapy.

6. My disease is hard to explain.

I have an inflammatory condition that affects my joints, but WTF does that even mean?

The best way I can describe it is like this: Imagine you are wrapped from head to toe in a giant piece of cellophane wrap, burrito-style. The degree of tightness you are bound varies from day to day.

On some days, the cellophane is loose, so you are free to move.

On other days, it’s so tight that you can’t move at all, but that cellophane is always binding.

Over time, your body parts develop deformities because you are constantly tight.

Fighting the cello-phone all day long makes you super tired, and sometimes you’ll just want to lay in bed all day and stare into space. That’s what it’s like to have inflammatory arthritis.

I’m the cellophane-burrito-wrapped girl that walks kinda weird.

The only thing I can do is embrace my new normal and help other people who are struggling with their disease embrace theirs, too.

This is who I am…

… and I’m cool with it.

Are you?

This blog was originally published on Bliss and Health.

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12 Truths People Affected by Juvenile Arthritis Wish Others Understood

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According to the Arthritis National Research Foundation, arthritis is the leading cause of disability in America. That means an estimated 50 million Americans, including about 300,000 children, deal with the pain of arthritis on a daily basis. It’s by no means an “old person’s disease.”

Although the number of young people with arthritis is so high, the condition is littered with misconceptions. So we partnered with the Arthritis National Research Foundation to raise awareness about JA. We asked our communities what they wish the rest of the world understood about JA. Here’s what they had to say:

1. “It’s a battle that comes with its own set of dragons and other obstacles, and sometimes you will be down and out for a while. But that doesn’t mean you have to give up on your dreams.” – Victoria Steed

2. “I was 18 months old when I was diagnosed. It was a hard childhood, however, it made me the resilient determined powerfully positive well rounded person that I am today. JA is a horrible thing, but life doesn’t end, and don’t ever let anyone tell you that you cannot do something!” – Danielle Lindoff

3. “You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.” — Carrie Folkerts 

You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.

4. It’s not just achy joints; it’s doctor visits, missed school days and missed special events. Our kids still have to put up with bullying at times for having what is known as an ‘old person’s disease.’” – Gaby Baldenegro

5. “I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.”  – Katherine Herrmann 

I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.

6. “I think the hardest part as a parent is hearing him wish for ‘one day without pain.’” – Andrea Thompson

7. “Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.” – Becca Duane

Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.

8. “It’s not just aches and pains! It is an autoimmune disease and can affect your skin, eyes, heart, lungs, and neck near the spinal cord.” – Courtney Smith Cooley

9. “Watching your child’s body turn on itself, and then watching them have to go through such grown up things like monthly blood draws, injections, pills and more pills, is completely heart wrenching.” – Jessica Ferguson Garcie

10. “Even though you look normal on the outside and try to keep up and do things with everyone else, you may be dying in pain on the inside.” — Linda Syrko-Shapach

11. “I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.” — Megan Vanellope Mueller 

  1. I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.

12. “I was diagnosed at 8 years old and I turned 40 this year. I want everyone to understand how amazing these kids are and how much daily life can be a struggle. These kids are some of the toughest and most resilient kids. People should take the time to get to know them and learn about their journey.” — Cat Hicks

What are some things you wish others understood about living with  juvenile arthritis? Let us know in the comments.

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20 Things People With Rheumatoid Arthritis Want Others to Know

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Arthritis, the leading cause of disability in America, is a degenerative and inflammatory disease that affects the joints. It has several types, the most severe of which can be deadly. While the cause of arthritis is still not fully understood, approximately 50 million Americans live with a form of the condition — equivalent to 1 in 5 people.

Despite that number, a lot of misconceptions exist around arthritis, even among friends and loved ones of people living with it. We partnered with The Arthritis National Research Foundation to raise awareness surrounding this complex disease. We asked readers: What are some things you wish others understood about living with arthritis?

This is what they had to say:

1. “The pain can cause depression. At night it hurts so bad, I don’t want to wake up the next morning.” — Marielle White

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2. “We are not faking it. It’s real, and it hurts.” — Annie Seifert

3. “It’s not our fault! People living with arthritis are often blamed.” — Donna Henry Bisogno

4. “It affects many children. Often I hear how young I am to have rheumatoid arthritis (I’m 34). When I tell people I was diagnosed at age 2, they can’t believe it. I wish people understood it’s not arthritis that comes with old age. RA is a disease that mistakes my joints as invaders and sends my immune system into attack mode.” — Jennifer Brennan Leach

5. “RA /autoimmune patients are the best actors out there. We push through every day despite how we feel.” — Sonya Enslow Caudie

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6. “Every day can be different.” — Marcy Wysocki

7. “Some of us get sick easily. The medications we take to keep our disease in check lowers our immune system. That means the slight cold you have will probably turn into bronchitis or pneumonia if I catch it. We can’t fight off infections like healthy people.” Stacey Howe

8. “I feel sad and lonely about missing out.” — Julie Max

9. “We might look ‘normal.’ But the pain is sometimes so unbearable all over our bodies that it feels like broken bones, muscles and ligaments.” — Melanie Mulliken

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10. “We aren’t lazy. We are just trying to thrive.” — Lori Rodriguez

11. “My illness is serious, but it doesn’t mean I’m checked out on life. I still want a dream career, to travel the world and do the impossible.” — Valerie Webster

12. “I don’t want to be ‘the sick girl,’ but it’s impossible not to have RA permeate every aspect of my life because it’s always there in the pain and fatigue.” — Rene Baloge

13. “I’m not super woman just because I don’t look sick on the outside!” — Mandy Dawkins

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14. “It is not the same pain everyone is always using for comparison. Before my diagnosis I’d never experienced pain like the pain from this disease. It is pain that nobody can possibly fathom until they feel it personally.” — Jeanie Parker

15. “I can feel OK one day and be sick/fatigued/in pain the next. Living with this illness that has no schedule and a mind of its own isn’t easy to plan my life around.” — Candi Wilson

16. “Even after 10 hours of sleep, my body may feel as though I have just ran 5 miles, have the flu and have just been in a car wreck, all at once!” — Lynn Harrison

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17. “I do not fake my disease. Some days I am fine… some days I kick my own ass.” — Brandy Abernethy

18. “It’s unpredictable. I’m constantly making plans and then having to cancel because my body is not cooperating. Constantly living with pain and/or extreme fatigue can break your spirit and make you want to disconnect from the world.” — Julier Ober Stebbens

19. “My disease is not the same thing as osteoarthritis. No, your ‘grandma’s knee problems’ are not the same thing as my systemic, debilitating, lifelong disease.” — Katie Jo Ramsey

20. “Read, learn and appreciate the Spoon Theory — that’s the best way to explain the battle.” — Crystal Sumner

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What are some things you wish others understood about living with arthritis? Let us know in the comments.

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My 6 Pillars of Managing Osteoarthritis After the 'Cures' Didn't Work

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My path towards ankle osteoarthritis (OA) began while I was playing collegiate basketball. Over the course of those few years, I was always spraining my ankle, sometimes very severely, and never taking the time to properly care for it. I was 21 years old and figured I wouldn’t have to worry about any ramifications until I was 50 or 60. But all the damage sustained over that short period of time led to early onset osteoarthritis in my right ankle at age 28. Until that point, I had lived an active life. I enjoyed playing basketball, golfing and just generally being on the move. That all changed rather quickly and 30 years too early.

Frustrated, scared and confused doesn’t even begin to describe how I felt.

During the first few years after my diagnosis I think I tried just about every “treatment” or “cure” I came across. I was, and still am, pretty stubborn, so I believed I could find a way to beat osteoarthritis. After all those cures failed to deliver on their promises, only then did I come to accept that I needed to learn how to manage osteoarthritis so I could live an active life.

Now 10 years later, at the age of 38, I’m still learning how to properly manage my OA. While I’ve made some mistakes, I’ve learned a lot. I’m still able to live an active life, but I’ve learned how to better manage my expectations.

To help manage my OA, there are six pillars I’ve learned lean on over the years. It’s these six pillars that have allowed me to grow and thrive even with my ankle OA.

1. Develop a support system. Both my family and friends have proven to be reliable support systems. Talking with them and even educating them about my osteoarthritis if needed has helped me better weather the ups and downs I experience.

2. Knowledge is power. Right after I was diagnosed, I wanted to learn as much as I could about my condition. I spent a lot of time reading about the experiences of other OA sufferers. I also read scientific articles and research to gain a firm grasp of the treatments that actually work and the clinical trials testing potential cures. All that content helped me to be better prepared to proactively manage OA, talk with my doctors about how ankle OA will affect me moving forward, and help others suffering from the same condition.

3. Own it. There are days when my osteoarthritis keeps me from doing much of anything. But on a day-in-day-out basis, I want to do what I can to ensure I’m living a life that allows me control my osteoarthritis as best I can. I pay special attention to my diet, exercise and physical therapy, and mental focus so I don’t get caught up in the mental rollercoaster that OA can sometimes create.

4. Better communication. I learned quickly that saying “My ankle hurts” doesn’t do an adequate job getting the message across about how I’m really feeling. Instead, being as specific as possible saves a lot of needless back-and-forth and frustrating communication. Here’s an example of what’s worked well for me: “Because my ankle is swollen and has limited movement, walking or even standing too much today is going to be uncomfortable. I’d prefer to rest and save my energy for another activity.” 

5. Coping mechanisms. Dealing with osteoarthritis can make me frustrated, impatient and grumpy. Those feelings get in the way of owning my condition, as I mentioned above. Learning various coping mechanisms, like meditation, provides a pathway to becoming better mentally equipped at managing my osteoarthritis.

6. Life balance. I still like to be active by backpacking and fishing or walking my dog. But now I have more realistic expectations about what I can do and for how long. I’m getting better at balancing my activity-filled days with ones where I sit on the couch all day.

My battle with osteoarthritis is now 10 years old, but I’m still learning how to best manage it while trying to live the type of life I want to live. It’s a delicate balance. Thankfully, I feel those six pillars have been hugely beneficial at allowing me to proactively manage my OA instead of it managing me. I still have a long way to go, but I’m confident I’ll still be able to thrive!

man sitting on rock with mountain view behind him
Ryan on a hike.

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 community@themighty.com. 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 the Friends Who Try to Understand My Disease, Even When I Don’t Understand It Myself

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Naomi, the author, and four of her friends in their school gym
Naomi and her friends.

I don’t think I’ll ever truly understand my arthritis. But just because I won’t, doesn’t mean we can’t try together.

1)  Thanks for trying to learn, with or without me, about my disease.

It’s hard being the only one of us with juvenile arthritis (JA), but knowing you guys put effort into learning what I’m going through makes me feel less alone.

2)  Thanks for asking how my doctors’ appointments go.      

Whether it’s physiotherapy, occupational therapy, rheumatologist appointments, MRIs or even just good ol’ checkups, I can always count on you guys to ask how they went, whether there were any updates, and if there’s any good or bad news.

3)  Thanks for giving me the confidence to share my story.    

When I’m worried what people will think or scared that I’ll be looked at differently, you let me know I have nothing to worry about and I should be proud no matter what.

 4)  Thanks for explaining it to other people when I’ve been asked multiple times already that day — you might even get better at explaining it than I am!

I’m proud to say you guys have mastered explaining what JA is in simple terms.

5)  Thanks for reminding me to take my meds on those forgetful days and trying to pronounce/remember their names.

As many medications as I have to take, there are as many days I forget to take them. I don’t know what I’d do if it weren’t for you all being the little ribbon around my fingers reminding me to do so.

6) 
Thanks for recognizing when I’m having a bad day and knowing just how to make me feel better.                                  

When I’m struggling to put my jacket on, tie my shoelaces, chew my food, open a door, carry a backpack and walk, you never fail to make me laugh (uncontrollably sometimes), say something positive, or remind me how lucky I am.

7) 
Thanks for walking with me, no matter the speed, and stopping when I need breaks.                                                      

I can be slow sometimes, but as long as we’re slow together does it really matter?

8)  Thanks for getting excited with me when I’m having a good day!

No one really knows how huge and few those days are for me except for you guys, and there’s no one I‘d rather share them with.

9) 
Thanks for challenging me while still knowing my limits (pretty much not letting me become a couch potato).

On those good days, and even some not so good, you push me to move, within my possible range of motion, so I can still feel normal.

10)  But most importantly, thank you for being the most amazing support system one could ask for.

I never in a million years imagined I would be as lucky as I am right now to have you all there for me — no matter when, where and why. You have made me laugh at the best times, and have sat and listened to me at the hardest. I don’t know if you realize the important role you played and are still playing in my experience with juvenile arthritis, but I hope this helps you recognize the impact you’ve had on me.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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 Submit a Story page for more about our submission guidelines.

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Young and Inflamed: My Experience With Juvenile Idiopathic Arthritis

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I’m pretty lucky when I think about my situation. I’ve never had a flare-up so bad I’ve had to go to the hospital. I can go away to school without much fear or worry. I can (for the most part) be a “normal” teenager. But juvenile idiopathic arthritis (JIA) is still a huge part of me.

At 15 years old, I started limping. I’ve since learned, at 18, that limping may be a first sign of JIA. If only we’d known that back then, maybe I could’ve avoided three confusing diagnoses. Maybe I would’ve been able to control the pain. Maybe I would’ve been able to increase my range of motion in my arms, leg and jaw. Maybe seems to be an overused word in my vocabulary since my diagnosis.

Medications have worked their way into my life as well. Celebrex, methotrexate, biologics and folic acid, words that once seemed like gibberish, are common in a sentence for me nowadays. But it’s not the medications I really pay attention to, more the side effects. In my experience, there’s often a sentence of the information sheets of the medications that’s similar to this: Remember, if your doctor has prescribed you this, the benefits most likely outweigh the side effects. That sentence is the reason I am not fully living like a “normal” teenager. Other teenagers might worry about how they did on a test, or if they’ll make a team. And though I have those worries, I also have to worry about if my hair will thin out, if I’ll be too drained or nauseous to do something, as well as other things.

It took time, but I have finally come to accept this disease — to accept that yes, I have JIA as a disease, and no, it will never fully go away, but I can choose to survive with it or let it take over. I, along with 24,000 other children and teenagers in Canada, will, and have to, take control of our bodies back. This is what we have to work with, and this is what we will work with.

Naomi on a merry-go-round

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please reach out to a medical professional with any questions or concerns you might have. 

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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