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3 Ways to Increase Arthritis Awareness This Month Without Spending a Dime

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Arthritis Awareness Month is here.

Do you feel different?

Probably not. We know your arthritis pain doesn’t take a month off but we figured we’d jump on the awareness month bandwagon because, why not? Truthfully, we think these months are a little silly which is why we created, brace yourself for a plug: #Arthritis365 on Twitter — because we need arthritis awareness every day.

Now that we got our feelings out of the way…

Here are three ways to increase awareness this month without spending/donating a dime. Yes, for free and with no strings attached. And as an added benefit, you can even do these activities in June and December, or any other month, because there’s no expiration date on awareness.

1. Sign up for research.

We know research can be boring and scary. It often has big words that normal people don’t use. But the reality is that it is super important. Did you know that without research there would be internet? Yes, no internet — where would we watch cat videos?!? The horror. But seriously, you would not be reading this without research. And as people with chronic diseases, we need research to advance treatments and help us live happier healthier lives. We created a simple app called ArthritisPower that helps you participate in research while gaining useful information about how your disease is progressing. Learn more at arthritispower.org.

2. Commit to advocacy.

No matter if you wear a red trucker hat or pink pussy hat, advocacy is important. Think about how local, state and federal policies impact your everyday life. Some may argue that advocacy impacts you more than research (but please don’t tell our hard-working research team that). To get involved in patient advocacy, check out our 50-State Network of patient advocates. In this program you will meet other patients who are leading the fight for better access and pro-you policies. Learn more at www.50statenetwork.org.

3. Share our patient guidelines.

Information is power. At least that what we are taught in school. We know that having a chronic disease like arthritis can be overwhelming and that when looking for information you could find a lot of bad information. Like really bad information. Information that provides a false sense of hope because someone’s friend’s aunt “cured” her arthritis by eating a rare berry while doing the Macarena. That’s why we created our patient guidelines so people living with arthritis have a trusted guide for their disease. We currently have patient guidelines for rheumatoid arthritis and plans to roll out more diseases soon. Learn more at creakyjoints.org/patientguidelines.

This blog first appeared on CreakyJoints.

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Thinkstock photo by syntika

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The Awkward Interactions I Face Because I Have an Invisible Illness

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“Woah, what are all the pills for?”

He points to the lineup of pill bottles sitting on my dresser. I take a moment to think about what I’m going to say. Generally, when I have a guy back to my place for the first time, I don’t like to open with, “Well, along with struggling with anxiety, I have a degenerative arthritic condition that is slowly but surely deteriorating my quality of life.”

So, I usually go with one of two approaches to deflect the question.

1. I make something up like, “I’m recovering from an injury.”

or,

2. Sarcastically quip, “I’m a drug dealer!” and hope the topic is dropped.

Invisible illness is a funny thing. When you’re 26 and don’t look sick, some people assume your heath is their business.

Am I out of line to think that asking that kind of question is inappropriate and intrusive? Do I really need to hide my medications before having company over in order to avoid this awkward interaction?

What about when I’m having a bad day, and mercifully, an accessible seat at the front of the streetcar becomes available? When has it ever been acceptable to assume I don’t need the seat, and then shout at me to get up and give the seat to somebody who needs it? The interaction, without fail, usually plays out with me getting up with tears in my eyes, and quietly telling the angry individual that I have an invisible disability and that they shouldn’t judge a book by its cover. But I don’t have a cane, walker, crutches, visible limp, or grey hair, so I must just be saving face, and my reply is ignored as horrified onlookers scramble to offer me their seat.

The real kicker? These kinds of interactions are what stop me from discussing my condition. As I write this, I think: should I post this on Facebook? Should I start an anonymous blog? Am I going to be flooded with “I had no idea!” and “I’m so sorry!” messages that I don’t want? My disability doesn’t define me, but each time I am faced with these kinds of thoughtlessness, it feels that way.

Here is what I want.

1. Before you judge me for sitting on the streetcar or taking the elevator up one floor, please take a moment to remember that not everything is what it seems.

and,

2. Please ignore the pills on my dresser. When I’m ready, I’ll tell you what’s up. And if I don’t, well, I’ve decided it’s none of your business anyhow.

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When I Chose to Be Compassionate Towards My Chronically Ill Self

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“Compassion is the keen awareness of the interdependence of all things.” — Thomas Merton

“Compassion is the greatest form of love humans have to offer.” — Rachel Joy Scott

“Until he extends the circle of his compassion to all living things, man will not himself find peace.” — Albert Schweitzer

“I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.” — Lao Tzu

“It’s not what you say out of your mouth that determines your life, it’s what you whisper to yourself that has the most power.” — Robert Kiyosaki

I have tried, my entire life, to be compassionate to others; to offer a listening ear, a hug, or whatever else seems the appropriate response for their suffering and need. I would like to think that I have achieved this… but lately, I have realized that I never offer myself that same compassion. In my head, I speak to myself in ways that I would never dream of using to another person. I am my own worst critic: cold, judgmental, harsh, unfeeling and uncaring. Since I have become disabled, it seems to have gotten worst as I blame myself for not being able to do the things I always have, even though my debilitating pain is a valid reason for the inability to do them. I just don’t cut myself any slack.

I follow Toni Bernhard, author of three books aimed specifically at those of us who are chronically ill, who have the most valid reasons for not living “normally” because of our health. She is also disabled and chronically ill. In her blog, “Turning Straw Into Gold” (on Psychology Today), she consistently mentions self-compassion, being kind to yourself and forgiving yourself for not being able-bodied or doing the things “that need to be done.” She planted the seeds of learning how to be loving and compassionate in my head — but more importantly, in my heart. I follow the Tibetan Zen Buddhist path, with all of the selflessness that entails. It’s very easy for me to be kind to others, to do what I can to alleviate their pains. However, it had not occurred to me to turn this way of living inwards, to my own soul.

And so I have begun to incorporate this into my daily life, as best as any imperfect being can. I don’t always succeed, but that’s part of the joy of both self-compassion and the practice of mindfulness: you acknowledge the lack, then let it go and start again. I am learning to have the patience for myself that I have never had before, to acknowledge my limitations without judging and without blame. My limitations just “are”; they exist without any connection to something I did or didn’t do.

In making this a part of my daily routine, I have discovered that I am also losing the rather judgmental way I had been perceiving the strangers on the street. Specific example: I am embarrassed, even humiliated, that I do not shower as regularly as I used to (every other day), nor do I shower as often as I need to. For someone who sits quietly most of the time, I sure can get stinky— and my hair gets greasy. Being showered and well-groomed has always been important to me, but I no longer have the ability to do it on anything approaching a regular basis. I simply lack the stamina and flexibility it takes to wash my hair or to bend and twist to wash my body. Some days, a shower is my greatest — and only —accomplishment. I think I had accepted this as just part of my life as a chronically ill person, but I was not self-compassionate about it.

Now when I see people on the street and they are less than my idea of groomed, I know from my own experience that it’s not from a lack of caring about how they look but rather from not having the ability to do so. Eureka has a fairly large homeless population… so there’s a whole segment of our society that doesn’t have consistent access to a shower. I know that this does not mean they are somehow less of a person than someone who can. I just didn’t apply that mindset to myself.

It’s not just about showers. It’s about anything for which I can condemn myself. I have always said that I have a great deal of patience for everyone else, but never for me. With the onset of chronic illness, with symptoms that prevent me from holding a job, I am being forced to learn this patience for me and my (perceived) short comings. Our society makes a lot of perceptions about its members, some of them valid but I think mostly mistaken. Perceptions are judgments–and who am I to make judgments about others when I have enough issues of my own?

I am wrestling with more than not having a paycheck job. My mother raised me to be a Southern housewife, to take care of my husband, keeping house and cooking meals. Add to that cooking the fact that before I became this ill, I was working towards having my own business as a personal chef. I feel disappointment in myself because I cannot clean the house as I want to. I am particularly unhappy at my inability to make basic meals, never mind the “gourmet” dishes that I so enjoyed creating.

These feelings, while valid (because all feelings are), are neither useful nor self-compassionate. I acknowledge the concepts of using our minds to (help) heal ourselves, but what I have cannot be “thought” away. I have structural damage in my spine which cannot be easily remedied. Any sort of treatment that would work, could work only for a while; there’s a reason it’s called “degenerative” arthritis. I do believe that with mindfulness — but especially with compassion for my own being, I can reduce or relieve a great deal of my pain and various lesser ailments.

For example, I must acknowledge the limitations my body has now, not what it used to be able to do. If I refuse to accept the true state of my body, I may be able to “push through” and do the thing(s) I want to — but I will pay for it in greater pain and even less ability for a period of time exponentially larger than the amount of time those actions took. Simple facts are simple facts, and the truth is very simple: I am very limited as to what I can do now versus what I did *then*.

Another aspect for self-compassion that I need is to stop the self-deprecation. I forget something — a word that means just what I am trying to convey or a task that needs doing. Then I chastise myself for being “stupid”… when it just a state of being. I understand that being in pain means less attention to focus on anything other than that pain — but I am still working on allowing myself the compassion to not fret about it and certainly not to punish myself. I am attempting to retrain my mind such that I accept my state of being, at whatever point I may be, on any given day, just as a state of being, with no particular emotions tied to it — and certainly not negative emotions.

The only time we can be sure of is this moment… and this moment… and this moment, for all of the moments of our lives. Trying to live at any other time, past or future, means that we aren’t living now. Now is all we truly can have, can experience in “real” time. To live in the now is very difficult sometimes, maybe more so for some people. All of us have connections to the past and hopes for the future, but if we let those connections and hopes replace the moment, we are not living our lives to the fullest, nor being the person that has this moment. “Be here, right here, right now. Everything else is just a dream.”

What is so important about self-compassion? As with real and abiding love, we cannot be truly compassionate (or love) anyone else until we know that feeling for ourselves, within our minds and hearts. It needs to be a natural and inevitable part of each moment, something that we don’t need to think about, or have to do any specific ritual to bring about this behavior. We “fake it until (we) make it” — and it only takes 21 days to establish a new habit. At first, it may seem contrived and even foolish to speak to ourselves with compassion. But if you will persevere and continue the practice of being kind to yourself, I believe you will find yourself both feeling happier as well as being a better person for that practice.

I believe our minds create our reality — what we think the world is, it is to us. So if part of our world view includes negative ideas about who we are or what we are, I think we will continue to behave in ways that will support, even validate that view. I believe we create a mindset that establishes a certain point of view and we can become locked into the view, no matter if it is actually true or not. A quote from Doug Adams says it all: “He was amazed at how different the world looked from a point three feet to the left.” That world view includes our own being; sometimes we need to step “three feet to the left” to get a new angle, a fresh perspective on what we thought we knew — even about ourselves.

If we are seeking to make our lives more fulfilled, if we want to create peace in our lives and to maintain the practice of loving-kindness and truly living in this moment, we must start from the point within ourselves that is the core of our being, the “who” of who we are. It is one thing to require real changes to ourselves because we are making poor choices in how we live–and quite another to berate ourselves for things beyond our control. Would you blame a person for being blind? Would you belittle someone for being elderly? Of course not. Then why would you — or do you — blame and belittle yourself for circumstances beyond your control?

And life is always about choices — and the magic of choices is that you can always choose a new way to go or do something. You are not bound to the past unless you choose to be; you are not endlessly longing for the future unless you choose to be such. Self-compassion is for those times when you are in pain (mental, physical, spiritually) and you want to lessen or alleviate that pain by understanding that all beings suffer and so the choice is the manner in which you deal with the problem.

Through compassion for our own state of being, we acknowledge our connection to the rest of the world, to everyone else around us. And we then understand that we are no more and no less than any other being — and compassion is the natural response for the human condition, even unto ourselves. The act of self-compassion opens us to a deeper relationship with those we meet. It encourages diversity and tolerance, mutual respect and a sincere honoring of the sacred being within each of us. And it begins with acknowledging our own sacred being, warts and all.

I close with this blog about self-compassion from Toni Bernhard, in which she shares some thoughtful and inspiring quotes about self-compassion.

Namaste!

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16 Songs to Help You Face Arthritis

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On the tough days with arthritis, a great song can help put you in a different frame of mind. A song can inspire you to keep pushing through the pain, remind you that you’re not alone, or even take your mind off the pain. Or maybe, you just need to listen to something that expresses what you’re feeling: frustration, anger, confusion.

We partnered with CreakyJoints to ask our communities with arthritis to share the song that gets them through difficult days. The next time you’re having a hard time, check out the songs that other people with arthritis turn to for inspiration.

1. “In the Tradition” by The Great White

“I can’t fake a smile through the evening, I’ll probably crack if the pain’s too strong. Play a song for me, but it has to be in the tradition of love gone wrong.”

2. “Til I Collapse” by Eminem feat. Nate Dogg

“You gotta search within you and gotta find that inner strength and just pull that sh*t out of you and get that motivation to not give up and not be a quitter, no matter how bad you wanna just fall flat on your face, and collapse.”

3. “Biscuits” by Kacey Musgraves

“Nobody’s perfect, we’ve all lost and we’ve all lied. Most of us have cheated, the rest of us have tried. The holiest of holies even slip from time to time. We’ve all got dirty laundry hanging on the line.”

4. “Good Life” by One Republic

“When you’re happy like a fool, let it take you over. When everything is out you gotta take it in. Oh this has gotta be the good life.”

5. “Good to Be Alive (Hallelujah)” by Andy Grammer

“And it’s good to be alive right about now.”

6. “Heaven Is a Place on Earth” by Belinda Carlisle

“They say in heaven, love comes first. We’ll make heaven a place on earth.”

7. “Heroes” by David Bowie

“We can beat them, just for one day. We can be heroes, just for one day.”

8. “Beauty From Pain” by Superchick

“After all this has passed, I still will remain. After I’ve cried my last, there’ll be beauty from pain.”

9. “Try” by Pink

“Just because it burns, doesn’t mean you’re gonna die. You gotta get up and try, and try, and try.”

10. “What a Wonderful World” by Louis Armstrong

“The bright blessed day, the dark sacred night, and I think to myself what a wonderful world.”

11. “Ooh Child” by The Five Stairsteps

“Ooh-oo child, things are gonna get easier, Ooh-oo child, things’ll get brighter.”

12. “Keep Your Head Up” by Ben Howard

“Oh my, my darlin’, keep your head up, keep your heart strong. Na, oh, no, no, keep your mind set in your ways.”

13. “March Out of the Darkness” by Papa Roach

“The only thing that will set us free is living through the pain and the only thing that I cannot take will never be the same.”

14. “Elastic Heart” by Sia

“I’m like a rubber band until you pull too hard, but I may snap when I move close, but you won’t see me fall apart, ’cause I’ve got an elastic heart.”

15. “Thunder Road” by Bruce Springsteen

“Oh oh, come take my hand, we’re riding out tonight to case the promised land, oh oh oh oh, Thunder Road.”

16. “I’m Still Standing” by Elton John

Don’t you know I’m still standing better than I ever did, looking like a true survivor, feeling like a little kid I’m still standing after all this time.”

What songs help you face arthritis? Share in the comments below.

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Why It's So Hard to Create a Life With Chronic Pain

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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 People Think I’m Too Young to Have Arthritis

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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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