You Are Not Alone: The Importance of Finding a Patient Community

As a chronic illness patient, it's easy to feel alone in your circumstances. Navigating the medical community is arduous at best, terrifying at worst, and sometimes it seems that there couldn't be a person in the world who understands what you're going through. The reality is that there are a whole lot of people who are dealing with the same things, and when things are really bad it's important to have a community to fall back on to show you it couldn't be further from the truth. Having people to gripe to, to ask advice from, and to share camaraderie with helps remove some of the fear and depression innate in any chronic illness.

These communities exist in many different forms. They are certainly not one-size-fits-all. There are a myriad of disease specific communities, and communities for disease in general. Here are some places you might find your community.

• DailyStrength. DailyStrength (called DS by it's users) has a multitude of support groups for all different illnesses, as well as for interpersonal problems ranging from loneliness to divorce.  I've mentioned this site before, and I'll mention it again, because I've found it to be a wonderful place to get support and ask questions. 
• Hospital-Facilitated Support Groups: Many healthcare organizations run patient-to-patient support groups face-to-face a couple times a month. Most places have things like cancer and dialysis support; finding a chronic pain support group might be a bit more difficult, but certainly not impossible. Most hospitals keep listings of support groups on their websites; the local newspaper is another place to look.
• Awareness activities:  Organizations hold events to promote awareness for various conditions, and if you're able to attend it's a great place to meet other people suffering the same thing. This type of event is much easier to attend if you live in a larger area, but sometimes they pop up in small towns too. The   Americaan Chronic Pain Association's   calendar tracks chronic pain events, here's a schedule for Arthritis Walks by state.
• Social Media: If just the idea of going the an arthritis walk makes your knees ache, social media is another viable way to connect with other people in the chronic illness community. Twitter, Tumblr, Facebook... all have huge amounts of followers, and many accounts held by people with chronic illness. Searching tags is often the best way to find these groups; once found, suss them out of a few days to make sure it's the type of community you'd like to be involved in and have your name/handle attached to.

Chronic Pain Fashion, Part 1; Ditching the Pants

When you're dealing with joint pain (and tummy issues from medication) like me, the vast majority of pants are hell. Jeans are particularly foul culprits; hard to pull on, painful to zip and button, and either too constricting or always falling down. Unfortunately, pants are now ubiquitous in our society. So what are some other options? Dresses, skirts, and the elusive pair of pants that doesn't suck. Here are some tips on each.

• Dresses. Flow-y and loose, dresses are a great wardrobe choice when dealing with chronic pain, because good ones essentially feel like wearing nothing. I like ones with some elastic that you can either step into or pull over. Cotton or jersey are breathable and don't put much pressure on your body in the way some synthetic materials do. They allow free movement, most don't have any fasteners to deal with, and they look super classy. Unfortunately, they're not great in colder weather, harder to get on when your arms are painful and stiff, and bad for high-wind.

Found here

Found here

• Skirts. The trick to finding the right skirt is to find a great fit and a nice material. I usually avoid any fasteners other than snaps to be easy on my hands. Skirts are a viable option for winter if they're long enough and made of the right stuff; wool is warm and comfy if you wear tights or leggings under to protect from itchiness. Good for when you can't get your arms above your  head

 

Found here

Found here

•  Alternative Pants. I know, it sounds counter-intuitive to the blog title, but not all pants are evil, and there are times when skirts and dresses simply aren't appropriate. One major time when I don't want to be caught with any sort of bare leg is dusk in Mosquito Country. Pants are required. The key to good pants are movement, softness of material, and fastener type.You want something that flexes with your body, rather than doing anything to constrain it.One design that keeps this in mind is the yoga-pant. Yoga pants are built for maximum comfort, and usually just slide right on without any fastening. They come in a variety of prints, and some actually look pretty classy. They also make your butt look fantastic. Cotton dress pants are another good alternative. I look for them in the mens section, since the sizing there actually makes sense and they're usually cheaper than ladies dress pants. Snaps and hooks are good fasteners. 

 

Found here

Found here

*I don't have personal experience with the articles of clothing pictured above, just with similar clothes. It's up to you to try it on and find out if it's comfortable for you or not!

How to Survive Chronic Illness: Letting go of Regret

Chronic illness makes you a flake.There's not many other ways to say that, though I certainly don't mean "flake" in the derogatory sense. Chronic illness makes you a flake because you never know when you're going to have to cancel plans. When you live with a debilitating illness, there are times when everything else must get pushed to the side while you just try to get through each minute of the day. No matter how hard you try, some things must get pushed to the wayside. This can cause a lot of feelings of regret and shame.

I bombed my last quiz of my undergrad career today after rushing through it, because my morning Voltaren was destroying my insides and I needed to get home and to the bathroom, stat. This isn't the first time that my grade has taken a hit as a direct result of being chronically ill, and it's not the worst; other times, I haven't made it to class to take an exam and had my grade dramatically reduced for the class. In the past, pain has left me trapped in bed, unable to attend birthday parties, baby showers, Thanksgiving Dinner. Each time I miss an important event, or have an event ruined by my symptoms, I begin to feel a big monster of regret looming over me. Here are some tips for beating the monster back.

• Realize that one experience doesn't dictate the whole of your life. When things start falling apart, it's easy to make generalizations and start telling yourself that you'll never succeed, that you'll always miss out on fun events, or that your disease is always ruining your life. All-or-Nothing thinking like this really is toxic. Each event is independent. Just because I bombed this test because of my health doesn't mean I'll bomb every test. Sometimes I have fewer symptoms, and I do quite well.
• Accept that you are not responsible for your body. Sometimes it's hard not to feel responsible for what your body is doing, but you are not liable. True responsibility requires the choice of doing otherwise. Simply willing symptoms to stop is as effective as willing your heart to stop beating; it simply continues; you have no choice.
• When appropriate, let people know why you can't attend an event. This may not be appropriate in every setting-- for instance, I keep explanations for absence to teachers very brief and try to simply provide appropriate documentation-- letting people know why you can't show up absolves any hard feelings. If you just keep canceling plans with only vague explanations, your loved ones may feel hurt and abandoned. It might seem obvious to you that you're  missing an event because you're in a lot of pain, but it isn't so obvious to outsiders. By letting them know, they'll be sure to keep including you in the future, rather than withdrawing.
• Develop creative alternatives whenever you can. Really try to brainstorm alternatives to situations that make you feel regretful. One of my big ones as a student was missing class: I've had professor who were kind enough to record their classes and post them online for access if you miss class. I've had Skype dates with friends when I couldn't leave the house to go out to dinner. "Pajama" themed get-togethers at my place and delivery pizza can replace fancy nights dancing. If you can find ways to connect even when you're feeling your worst, the regret monster doesn't have a chance to come out in the first place!

To document or not to document? That is the question

Living with a chronic illness, it's easy to push the little symptoms under the rug. When you're dealing with the basic problems of arranging medical care and somehow still managing to live your life, the task of devoting even more time to documenting symptoms and changes is daunting. It's hard to know exactly how updated you should keep your doctor.

One way of monitoring symptoms is to keep a pain or symptom journal. For people whose disease may cause times of visible change (say, a rash or swollen joints during a flare) taking photos is one option for keeping your doctor up to date. Keeping symptom journals or taking photos during symptom outbreaks has some benefits and (unfortunately) some drawbacks. Here are some pros and cons of keeping documents of your symptoms.

pro: A daily log shows changes over time. This information showing improvement or decline can be helpful when addressing your needs with your doctor. It can also provide a lot of information about whether or not a treatment plan is working.

con: Our methods of quantifying symptoms in self-report change as we adapt to them, so the information may not be valuable. I remember the first real flare I had: my chest just ached and I would have rated it 10/10 pain. However, when it didn't go away, and as it still hasn't, I adapted. Since I'm used to that pain on a daily basis, it might now only register as a 4/10, but that doesn't mean the pain has really improved.

pro:  Documentation can help show patterns in your symptoms that you weren't aware of. For example, if you track pain and food, you may find that a certain type of food makes you flare, or that your pain is correlated with times of high-stress.

con: Doctors are quick to accuse patients of catastrophizing when they appear too proactive in their healthcare. This is a major problem because it rejects the notion of patient and doctor as partner, but it still happens. I don't have any answers, and I've been jilted by this in the past, so I know it was worth a mention.

pro: Logs can be helpful reminders of infrequent symptoms. If you write down new of puzzling experiences, you can refer back to your log when you discuss it with your physician to keep the details straight in your mind.

con: Tracking your symptoms can be depressing! This is ultimately why I decided to discontinue my pain log; too many days of writing down high pain really make me start questioning my whole chronically ill existence. Because I don't have a whole lot of new symptoms and I'm not currently receiving any real treatment, the monotony of recording my pain started dragging me down.

Amphiboly: Why It's Important to Read Your Medical Records

I've (almost almost) got a BS in Philosophy, and one of the first things I learned in my curriculum were the logical fallacies. Logical fallacies are miscommunications which lead to an irrational argument. One of the most well-known logical fallacies is ad hominem, where in an argument, someone attacks a man, rather than that man's position. A less well known fallacy is amphiboly. Amphiboly happens when statements are overly ambiguous or too short to be logically meaningful.

Logical fallacies are found everywhere: news, marketing, books. But one place that they're found may surprise you: your medical records. Often, doctors fly through writing your notes after your visit, and sometimes, the results contained therein are shockingly different than what you reported. Symptoms may be listed in words that are vague or flat out wrong: "patient complains of pain" instead of "patient complains of aching and stabbing symmetrical joint pain." Doctors may also make character judgements (read: ad hominem) in your notes for other doctors to read: "needs psychiatric help," "catastrophizer," and "problem patient," are particularly damning. Unfortunately, when something gets written in your notes, it can affect the treatment you receive from everyone else in your healthcare team. There's not a whole lot you can do, but here are some tips on keeping your medical records free from fallacies. 

First, a confession: I'm not practicing what I'm about to preach. After round after round of horrible doctors notes, I've stopped being proactive about my medical records. But if you're just starting out your journey with chronic illness, keeping the record straight early on is of vital importance.

1. Read your medical records! That should go without saying, but oftentimes we don't. Many doctors offices don't make it easy to get a hold of your records either, sometimes charging fees and actively discouraging you from getting them. Don't be dissuaded! As GI Joe always says, "knowledge is half the battle."
2. Look for flagrant errors. Some errors are huge and easy to spot. One example: my mom had pain in her arm after radiation treatment for breast cancer. Upon talking to the oncologist, he wrote that she was having femur pain, and he called in orders to X-Ray her leg! These errors need plain-and-simple correcting. Talk to your doctor and let them know that you read your charts and there was an obvious mistake.
3. Check for amphiboly. Is your doc glossing over your symptoms, or using phrasing that other doctors won't understand? A good way to check this is to have a friend who doesn't know your medical situation read your charts and tell you what they infer from the notes. Could they describe your symptoms accurately? If they weren't anywhere close, there may be ambiguity at play. You can't just call your doctor and ask for this to be changed, but it's important to be specific about your symptoms at future appointments and perhaps mention that you noticed they were vague in their notes. 
4. Beware of Ad Hominem. Sometimes you think your relationship with a doctor is great...until you read their notes, and find out that they've labled you a "catastrophizer" and think you should get your head examined. If your doctor is saying things that question your character rather than your disease, beware. It may be time to find a new doctor. If you like your doctor and prefer not to switch, treat lightly when bringing things like this up. You don't want to make things worse.

On Choosing a Bitchin' Mobility Device

Not so long ago, I became the girl with the purple cane. I had injured my left foot 2 years prior to my first JAA/chronic-pain-monster flare in 2007, and it never healed. In the years since it had only gotten worse, and after a series of falls, I found myself in the Assistive Devices aisle in a chain drugstore. The choices for mobility aids weren't overwhelming; only a couple feet of display space, but there were a fair amount of choices I had to make about what it was, exactly, that I wanted. Here are my tips on finding the right device for you.

1. Think about what type of device suits your needs. There are a world of options out there. The store I went to had a couple different styles of crutches and walkers, and a decent selection of canes. Serendipitously, it was a cane that fit my needs. Sherman Oaks Medical Supply offers a great overview of which mobility aid might be good for you. I decided on a cane (though often long for a walker with a seat when waiting in lines!)
2. Comfort is key; walk around a little bit with different devices and find a design that feels good to you. Canes have handles that come in many different shapes and degrees of curve.  Find one that feels great to you. If you're not sure where to stare, here is a guide which explains some different handle types. My cane has a Offset handle, which isn't listed. Consider the your material too: wood is heavy, aluminum is light. The weight really matters when you're carrying it around with you everywhere.
3. Don't forget about aesthetics. Aesthetics was hugely important to me when picking out my cane. I didn't want one that felt too "old-fashion," so I disregarded the wood canes (I had an awful experience getting teased for borrowing a great-uncles old oak cane in 7th grade and haven't forgotten!) It was also important to me that it didn't look too clinical, so the plain silver aluminum ones were nixed. I decided to forgo a pattern, so that it would blend in a little better with my wardrobe. 

I came to the decision that a purple aluminum cane like the one here would be the best choice for me. It set me back less than $20, and it was so worth it in terms of improving my mobility.

HAWCM- Haiku

Day 13: Write a poem about your illness.

joints hurt so much that
sometimes you just lay in bed 
wanting prednisone.


Ouch. ouch. ouch. ouch. Pain.
Swollen, aching, stabbing pain.
It hurts all the time.  
 

Wego HAWMC: Sensationalize

• Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?
• Share a ludicrous headline or cure.  Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.

 The most ridiculous thing most people think when they hear "autoimmune arthritis" is that it just means "achy joints like grandma has." Most people don't understand that there's a huge difference between autoimmune arthritis, which is essentially an having allergy to your joints, and osteoarthritis (OA) , which is wear-and-tear pain caused from use. Unlike OA, autoimmune arthritis can affect children, can't just be managed with advil, and often involves WAY more organs than just your joints, including your heart and lungs. Autoimmune arthritis kills, OA does not. I don't mean to discredit the pain suffered by those with OA, but autoimmune arthritis is a whole different monster.

I just recently got offered a fairly absurd "cure" from my mom's old boss: "Earthing." Basically, the idea is that all disease is caused by electromagnetic waves in the air, and the only way that you can release the electromagnetic waves is by walking outside barefoot and sleeping on some metal which is grounded into the dirt outside your window. I just give it the old polite smile-and-not bit, not mentioning the extreme lack of science and the absurdity given my mostly-barefoot summers (because honestly, who wants to put shoes on swollen feet when they don't have to?)

When Words Hurt: How To Respond To The Critics of Your Disease

Living with chronic pain hurts.

That's a given. It's even mentioned in the title. But sometimes the emotional pain can cut deeper than the physical agony. Sometimes, friends and family manage to say those little words that can crawl under your skin and sear like hot irons:  
"It can't hurt that bad!" 
"C'mon, man up."
"Just take a Tylenol."  

When those whom you love doubt your pain, it makes everything worse. Here are some ideas on how to respond to such an inflammatory remark.

1.  Attempt to understand where the person is coming from. Usually, people aren't trying to hurt your feelings. Many times, phrases like this are just the result of ignorance. We live in a culture the propogates a fix-it mentality. When people come across a problem or something they don't understand, they throw out an idea to fix it. When that idea doesn't work, they reject that the problem exists. Chronic pain is a problem with no quick fixes, so by nature it makes people uncomfortable. If you can understand why the person is imposing that attitude on you, you can help to change their mind.
2. Don't just brush it off. It's often hard, but it's best to acknowledge when someone says something about your pain that hurts you. It's hard to believe, but if you don't speak up, they honestly might not know they said something wrong. By mentioning that they hurt your feelings, you can open up a dialogue that might help the both of you.
3. Teach people about your condition. Since so many nasty comments are the result of ignorance, a quick lesson on your condition, or even on Chronic Pain in general, can help people understand where you're coming from. For example, most people don't really understand that there's a difference between Rheumatoid Arthritis and Osteoarthritis (wear-and-tear arthritis.) By explaining to people that their grandmother is able to take advil and forget it because her pain is from use, while my pain is equivalent to my body being allergic to every joint and thus filling with blood, they begin to understand the difference between acute and chronic pain. 
4. Let them ask questions. And even encourage it!  We live in a culture which emphasized political correctness, but sometimes this hampers curiosity and understanding. If you're comfortable answering questions about your condition, encourage people to ask. Medical conditions are varied and complex. Certain things that make perfect sense to you-- being able to hike one day and confined to bed the next because of pain-- don't make sense to others. 
5. But know when to tell them to "shove it." After attempting some of the above, you might find that the person you're talking to still doesn't "get it." Take a deep breath, and accept that. Some people don't want to understand where you're coming from. Simply put, some people are assholes. Try to give them the benefit of the doubt, but if it's clear that nothing you're saying sticks, it's perfectly acceptable to tell people that they are entitled to their opinions but you don't want to hear them.    

Aspirations as a Health Activist

(Skipping a couple days of the Wego HAWMC, but moving right ahead...)

• “If I could do anything as a Health Activist...” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible?

• What’s your one, three, or five year plan for your Health Activism? 

 

I have so many aspirations as a health activist, but first and foremost, this: I want to make access to a patient advocate readily available in as many hospitals as I can reach. Being ill is so scary; sometimes it's nearly impossible to coordinate appointment times, get doctors to communicate with each other, and line up outside help for tasks of daily living. But with access to a patient advocate, that could change. There would be someone to help you along in the process. A patient advocacy program would save money in the long run, because coordinated care means fewer unnecessary tests and less time spent at the doctor. If my health weren't a factor, I'd be getting ready to pursue a masters degree in Social Work to attempt to become a patient advocate. But because there's no way this body would survive grad school, I'll just have to help by contributing to the community of patients who advocate for themselves. I hope this blog is one way I can contribute. 

 

With health things being as they are, I'm not comfortable planning in advance. But if I could outline my ideal progression for the health care industry, it would be a steady change towards patient-centered medicine. In one year, it would be nice if doctors became aware of patient-centered medicine as a second option compared to pure by-the-book check-list medicine. In year three, I'd like to see doctors implementing this wholistic approach of focusing on the human-in-the-world on healthy patients, and in year five, I'd like to see it implemented on us, the chronically ill.  I don't think we can stand for anything less.

HAWMC Day 2, Introductions

• Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

• Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.

Right now, my condition is sort of a mystery, but, because of the treatments that seemed to work, I'm thinking something along the lines of autoimmune arthritis is probably what best describes what's wrong with me; chronic pain would be a more general approach. I hope to address both.  

5 Things I Want People Suffering from Pain to Know:

1. If you feel like you're in pain, you are. Don't ever let anyone tell you that you're not in pain, or that your pain isn't as bad as you think it is. The truth is that pain and perception are totally, inextricably bound. Somebody telling you you're not in pain is like them standing in front of your face and vigorously telling you that you can't see them. If you perceive it, it is. End of story.
2. Branch out and try anything you feel comfortable with to help make you feel better, but don't feel pressured to try something you don't want to try. Some people get great results from things like acupuncture, massage, yoga, or going gluten free. Others don't. Be open to new possibilities, but don't feel compelled to try every suggestion. 
3. Connect with others who understand pain. Let's face it, "normals" don't always understand the trials of facing chronic pain, and they can often be insensitive. It's absolutely invaluable to have a group of people you can vent to who understand what it is that you're going through. They can also offer great advice about their own experiences with various treatments.   
4. Take care of yourself. Don't feel ashamed if you need to cancel plans, if you need to sleep in until noon, and if many days you just don't feel up to going out. Real friends will stick by you no matter what, and the people who don't weren't worth it anyway. I know, it sounds cliche, but it's true.  
5. Find a few good distractions. When your pain is high, anything to take your mind off it can help. I love Netflix/Hulu for watching comedy (true fact: laughing releases endorphins which can help pain,) online scrabble, and looking up tiny houses. There's a world of opportunity on the internet, so find your bliss to help you through the bad times.  

 (So, those were more like tips than trivia, but, such is life) 

5 Links to Helpful Sites

1.  If you're dealing with autoimmune arthritis issues, RA Warrior is indispensable. Founder of the Rheumatoid Patient Foundation, her website addresses a myriad of issues faced by autoimmune arthritis sufferers. 
2. Connecting with others suffering from your conditions can be hard, but the online support group Daily Strength offers a ton of different virtual groups focused on a huge variety of topics. 
3. Tumblr is a great distraction, because it gives you access to a world of people with various interests...
4.  Another great distraction is Lexulous, an online scrabble website. 
5. For college students, Chronic Curve offers a great deal of information about navigating campus with a disability.  

  

Health Activist Writers Month Challenge: Why Do You Write

WEGO Health is sponsoring a blog challenge for health activist writers, and while I'm entering about two weeks late, I plan to complete the full 30 posts, so I'll start with day 1.

Day 1: Why do you write?  Tell us a little bit about why you write about your health online and what got you started. How did you become involved in Health Activist Writers Month Challege (HAWMC)? 

I decided to start this blog because I'm fed up with our current status quo in healthcare. The paternalistic model of healthcare which was so prevalent in the 20th Century should have remained there as a relic, instead of continuing to increase our healthcare costs while decreasing the quality of life in the patient. There are many other health relics from the same time period which we've done away with, like the widespread use of tourniquets, iodine, and Freudian psychotherapy. These things were abandoned when it was recognized that they made patient outcomes worse. Yet we continue to operate in a system which emphasizes a divide between doctors and patients, with doctors spouting jargon and refusing to believe a patient's report, and patients often too scared to ask questions and participate in their medical care. The truth is that nobody knows their body better than the patient, and the patient needs to be in control of their treatment if we want healthcare outcomes to improve. I blog because I wish to advocate for patients, and to help patients advocate for themselves. I've had many doctors who resent me because of this. Resent me because of the fact that I refuse to silently submit to which ever treatment they suggest, no questions asked.  I've been dropped by 2 rheumatologists for this reason, and one primary care doctor for this very reason. Doctors have very fragile ego's. Yet I refuse to let someone tell me that one of my joints isn't painful, and I refuse to let them tell me a drug isn't helping when it's making me feel better. It's only through advocacy and raising our voices that we can convince the medical profession that it's time for open dialogue. And so we must write. I'm participating in HAWMC because I hope it will be an opportunity to share my experiences with a wider audience. The voice of the patients must be heard.