Woman looking through window, back view

I recently was invited to an event that I would have loved to have attended.  Yet, due to what seems like a “never-ending” flare up from my arthritis, I had to decline the invitation. I knew where this place was and I knew the chairs. Oh, the chairs. Why must the chairs always be an issue?

Since I have a type of inflammatory arthritis that greatly affects my back, I live with chronic back pain. The past two years there has been an additional symptom of severe burning down my left leg when I am sitting for more than a few minutes. Chairs are extremely important to me and probably to the rest of the people with back pain out there. But when I say important, I mean it. The chair is a deal-breaker. After many painful experiences, if I know a place like a restaurant, an event, etc. has an uncomfortable chair I won’t even go. Unfortunately, not only will it cause me great distress while I’m there but it can trigger a flare-up that could last for weeks. To imagine that people who do not experience chronic back pain never even have to think about what kind of chairs will they be sitting on… I find it almost astounding that a chair could be so irrelevant for some and yet it has so much control in my life.

After really thinking about it, I decided I had to say no to this event. However, after saying no, I felt a number of emotions. My immediate thoughts were: Another thing this pain has taken from you, another disappointment, and another isolation. To make matters worse, I decided to look on Facebook to see who would be attending the event since it was local. As I scrolled through the list, I saw several girls that I had graduated high school with. These girls were all my age, married with children. They looked happy in their pictures. They looked like they created a life for themselves. They created their own families. They moved on and appeared settled. They had what I wanted so badly: a real life. Why did they get to have the freedom of creating a life without chronic pain? Why did I have to be limited and they didn’t?

And then it hit me. It was the freedom that they had that I desperately longed for. The freedom that was taken away when I was only 15, when this pain began. Freedom to do whatever you wanted to do without being a slave to the chains of chronic pain. I wasn’t able to live on my own, work, and have a social life due to the pain. It stole and robbed me of what I wanted in my life. To me, when you are young and you get hit with chronic pain, dreams and hopes get halted. Believe me, I have tried and continue to try to re-shape my dreams and hopes, but somehow the pain always seems to get in the way.

Further, I knew the chairs would bring me physical pain, and I knew seeing these people have the life I longed for would bring me emotional pain. I know I am strong and try to put on a brave face. But, I didn’t want to put myself on display at this event. I knew how it would go, they would ask: how are you, what do you do? Are you married? Where do you live? All the questions that I dreaded having to answer. As you read this, you may be thinking I am hiding from these people or for that matter, anyone from my past who may be curious about my present life. But, the funny thing about hiding is that you are really hiding from yourself.

So, perhaps I am hiding. Maybe it hurts too much to face and accept what chronic pain has done and taken away from me. Did I plan my life to go like this? No. I thought I would be so much more at this point in my early 30s; living on my own, a professional, a wife, maybe even a mother. But, I’m not any of those and I blame you, arthritis and chronic pain. You are at fault, not me and I can be angry at you and even hate you. Yet somehow I will have to find a way to grieve what you have taken from me and create a life for myself.

Who knows, maybe I will have a life one day like those other girls have. Except there will be a difference. I will know the pain, frustration and perseverance it took for me to get there and I will never take it for granted.

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When you think of someone having arthritis, you typically think of an elderly person having the condition. But what happens if the person is young? Or even really young like 5 years old? Juvenile arthritis “can affect children at any age,” according to the American College of Rheumatology.

So why is it so hard to believe that arthritis can affect young people? In my view, we are so stigmatized as a society to place chronic illness and disability only on individuals who are older. We can’t even fathom that young people can face those same challenges as well.

A young person can actually be in worse shape than an older person, but is their illness treated with the same respect as someone who is elderly? I’d argue this is not the case. Since society almost “expects” people who are older to have a chronic condition, the challenges they face with an illness can be treated with a certain sense of dignity.

Have you ever questioned an elderly person’s pain? Have you ever said, “They don’t look sick, so maybe they’re just making it up for attention.” People often give up their seats on a bus or train for an elderly person who looks like they are in pain. Has anyone ever offered a seat to someone who is young and has an extremely hard time standing?

I’m pretty sure the answer is no. And the reason why it’s no is because it’s unexpected and, at times, hard to even believe someone who is young cannot be physically active. It hits even closer to home when a young person with a severe invisible disability is not only questioned by society about the severity of their illness but also by their friends and family members.

So why is it like this? Let’s take a look at another common example. When someone pulls into a handicapped parking spot, the person who gets out of the car is expected to be visibly sick or old. However, this isn’t always the case. Some young people who look completely well need to use handicapped parking spots because they can’t walk far or have some other limitation due to their condition. But they’re often met with distrust from bystanders who hold the belief that handicapped parking places are for two kinds of people: senior citizens and the visibly disabled.

I’m 33 and have severe inflammatory arthritis that is completely invisible to others and have gotten looks of utter disbelief when I’ve used a handicapped spot. But for an elderly or visibly disabled person, there are no questions. They are “allowed” to park there. If you don’t look sick, you aren’t. This whole notion seems ridiculous to me.

My arthritis viciously attacked my heels and spine, and it’s hard for me to walk long distances without my heels throbbing. I know how much I need that handicapped parking spot in order to get to my destination. I know my life and live with arthritis 365 days a year. But they don’t know my story and judge what they see. Isn’t it time for people to be aware that there are people with invisible disabilities like arthritis who don’t appear visibly disabled? Aren’t we ready as a society to become aware and educated that arthritis occurs in young people and how disabling it can be?

Young people with chronic pain from arthritis and other diseases that often disable them in an invisible fashion can get tired and frustrated of society thinking that they are trying to take advantage of “the system.” We are not. Believe me, we don’t want attention, and we’re not trying to take advantage of anyone.

People need to understand that things like handicapped parking spots are not only for people over 65. It’s about time we recognize and understand that there is no age limit on pain and disability. It affects all ages, all races, all religions — none are immune.  

And yes, it’s time for young people with debilitating invisible diseases to be treated with the same dignity, grace and respect that people who are older seem to naturally receive.

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Image via Thinkstock Images

With winter comes sweaters, family gatherings, warm drinks, and, for many people with chronic illnesses, a shift in the severity of their symptoms. Cold weather, rain, and a change in barometric pressure can exacerbate symptoms for some, while others may actually feel better as the high temperatures of summer start to wind down.

We partnered with CreakyJoints to ask our communities how weather and seasonal changes affect their chronic disease. If you’re also experiencing changes to your symptoms as we move into winter, the responses below will assure you that you’re are not alone — and if you’re reading this because you have a loved one with a chronic disease, perhaps you can take this as inspiration to check in on them the next time it’s rainy and cold.

Here’s what they said:

1. “I’m better at predicting rain than the meteorologists are a decent amount of the time. I have arthritis and fibromyalgia and when a storm is on the horizon, my body starts to ache.”

2. “I have Ehlers-Danlos syndrome, and in the winter I can feel the pressure bearing down on my bones. I can feel the fibers of my muscles and tendons get stiff, and shivering or tensing up from the cold really wear me out more. I pop and I lock up easily. It’s like being an unoiled Tin Man.”

3. “I live in the mountains and most of the folks rely on me as a barometer. They know if I start feeling unwell it will rain or snow up here depending on the season. I have been accurate too many times to count.”

4. “My main problem is summer and heat intolerance. The 40+ degree Aussie days sometimes feel like I’m being cooked alive and are so taxing on my health these days… I always die a little inside when I see people wishing for summer.”

5. “The cold rainy weather is the worst. When a front comes in, my knees and wrists will hurt. My tendinitis in my shoulder flares up. I’m more likely to get a headache or migraine. Cool dry weather is best.”

6. “I have Arnold Chiari malformation and hydrocephalus. It’s not so much the weather that affects me but the barometric pressure. When the barometric pressure is above 28.3, I feel like someone has put cement blocks on the top of my head and it’s crushing down on my neck and shoulders.”

7. “Winter is a personal hell for my rheumatoid arthritis. It takes so much longer just to walk and use my hands on a cold morning then it does on a warm one. Worst days though are when the weather has been warm then unexpectedly goes cold. Feels like a slap in the face to have the weather affect my quality of life so much.”

8. “When the days get shorter and it gets dark earlier, I am more isolated. I can no longer drive after dark because of my multiple sclerosis and it makes it hard to get my kids to their practices and activities.”

9. “I do better as the weather gets cooler. I have myasthenia gravis, and heat makes it hard to breathe and makes me feel like a limp noodle.”

10. “If I’m going to have a flare-up, it’s going to begin in mid-September! I was feeling absolutely fantastic, and then tropical storm Hermine came to the Outer Banks while I was down there, and I haven’t felt good since!”

11. “Cold and damp are just killer for me. My bones just feel like they are breaking with each move I make. High humidity in the hot summer does the same thing. Living in central Indiana is not arthritis-friendly.”

12. “All the forces of nature that react to change the climate feel like a storm out of control in my own body. There is nothing I can do but ride the storm out. I can literally feel every nerve explode.”

13. “My body is a thermometer. When it’s about to be damp, windy, or raining my body warns me most definitely to get bundled up quick!”

I’m only a stone’s throw away from the operating room to have my right ankle fused because of chronic osteoarthritis. I’m so close, I can see my surgeon’s face as he waits for me inside. He’s wrapped up in his scrubs along with the anesthesiologist and nurses.

Whether the ankle fusion happens next year or three years from now, that’s unknown. The only thing that is known is that it’s going to happen.

Since the when is unknown, I feel a greater sense of urgency to cross off a few items from my bucket list while my ankle is still healthy enough. One of those items is taking my dream hiking trip on the High Sierra Trail, which I’m scheduled to leave for later this week.

After this hike is over, I’ll still take short weekend trips, but those will only require a little walking, nothing like a 70-mile, 10-day hike through the Sierras. This is it. This is the one.

While visiting my doctor to discuss what this hike would mean for the health of my ankle, we both felt that it is not the best idea. We talked about the chances of feeling discomfort during and especially after the hike as well as damaging the ankle even more. While I was able to get a cortisone shot to help with any discomfort during the hike, it’s only temporary. What’ll happen after is more of the unknown.

I’ve been fortunate enough to remain pretty active for a long time. But now my osteoarthritis is dictating what I can and cannot do physically. When trying to manage chronic OA at the age of 38, it’s important that I know my limits and have realistic goals for my activity levels. I’ve finally come to the acceptance that it’s time to move on from hiking and find another activity to pursue.

When I return from my hike in mid-September, it’ll be time to find a new hobby. But I’ll be confident in my approach to find that hobby because of the way I’ve approached previous barriers created by my osteoarthritis. Below are three ways I’ve been able to approach those barriers:

1. Accept reality: Knowing that it’s time to move on helps make taking that first step that much easier in looking for something else.

2. Be proactive: For years I’ve been working hard to do what I can to remain healthy and be out ahead of my osteoarthritis limitations. I’ll be able to draw on that experience to help find out what’s next.

3. Keep an open mind: I don’t know what the experience will be like as I search for something else. But being open to new experiences will allow me to find the best fit for the next stage in managing my osteoarthritis.

There are a lot of unknowns about what’ll happen once the final hike is over, the health of my ankle being only one of them. But I’m not only looking forward to the taking this amazing trip, but for the adventure that will come after it as well.

Lead photo courtesy of Thinkstock Images

The handshake has been around for a very, very long time. And it’s the customary thing to do when you meet people for the first time. The problem is, sometimes I can’t shake hands.

On days that my arthritis is acting up, you’ll notice my hands aren’t really doing anything. You won’t find me reading a book in bed. I won’t use the remote to fast forward through the commercials. And I’ll try to shoo the dogs away when they want to be petted.

Now if I have to go out somewhere that particular day, I’ll try to stay away from people so I don’t have to hug someone I know or shake hands with someone I don’t. Arthritis days can make someone very unsocial, just not on purpose.

The thing about arthritis is that the possibility of pain is always hiding under the surface just waiting to strike. And when it does, it’s hard not to give into it.

It’s not like my fibromyalgia pain. When that strikes, it forces me to be bedridden until it goes away. With arthritis, it’s a bit different. There are still dishes to be done, dinners to be made and laundry to fold. And in my case, I have an adult child with special needs who requires assistance throughout the day. That’s not something that I can just say, “No, I won’t do that today.” So how do I go about my day when the arthritis in my fingers is so bad that I feel like I want to cut them off?

It’s usually a good day to enjoy things like frozen pizza. It’s easy to cook for a family and doesn’t require any special preparation. Or I’ll microwave a batch of precooked chicken wings.

As for the dogs, instead of scratching them on the head, I’ll just pat them. That requires no finger joint movement. As for the laundry, well, that can simply wait. And that goes for all of the household chores. They’ll be taken care of once my fingers allow me to do so. Fortunately, for me, my arthritis pain usually only last for a day or two. I know that others, like my friend, Sonya, can’t say that. Theirs is an everyday challenge.

It also helps that I have an understanding spouse who is willing to pitch in and take over when I’m not able to. For that, I am very grateful.

Lead photo source: Thinkstock Images

Heading back to school with juvenile arthritis (JA) can be tricky on your joints. Follow this list from elementary to high school to make the most out of your school year!

1. Apply for a government disability code (IPP). This recognizes that you have a physical disability and allows you to use accommodations in the classroom.

2. Ask your physiotherapist to write a list of accommodations that you can distribute to teachers and gym instructor.

3. Ask for extra time on tests, computer use for in-class essays, and extensions on assignments when you are away for an appointment.

4. Ask for printed copies of notes or have power points emailed to you. Have your teachers prepare pre-packaged notes for infusion days! Don’t let your disease impact your grades.

5. Make sure to empty out your overflowing binder to reduce the weight you carry. Use two sets of textbooks (for at home and in your locker).

6. Use pencil grips!

7. Use a laptop, iPad and voice recognition software.

8. Back to school fashion doesn’t have to been a strain on your joints. Look for comfortable foot wear (Birkenstocks or Nike) and find a trendy backpack. Don’t hurt your joints by wearing flats or using a satchel.

9. Get a locker in a central location and ask for elevator access.

10. Circle multiple-choice answers instead of bubbling in a Scantron or ask about oral testing.

11. Take advantage of zipper pulls, velcro, easy-to-open containers/water bottles

12. Keep your teachers and gym teachers informed. Fatigue and sore joints can be misinterpreted. Don’t let your participation marks fall behind!

13. Modify gym activities. Participate in sports that you can do and take breaks!

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