Health Update: May 2017

Don’t get too excited; I’m not 100% sure how much I’m “back” in my blogosphere. But I have been getting the desire to revive this space and come off of my hiatus. In saying that, when I officially do come back, I want this blog to branch out into more of a lifestyle space. I think my break from blogging stemmed from burn out of “Chronically Kristin.” What I mean is that I spent so much time and energy last year in physically dealing with my health, that virtually speaking about it, taking on freelance work speaking about it, and organizing more opportunities became too much. I honestly just got sick of my chronic diseases and talking about them. Don’t get me wrong: that has always been one of the main goals of this blog, and I envision it staying that way somewhat, but as much as my diseases are a part of me, they aren’t nearly the only parts. And I want to highlight and talk about that more. So! More to come on that. 
One thing I did want to do is publish a true-to-form health update. So many things have changed for me in the past 8 months that this seems like a logical place to start if I’m going to be back in the blogging game. 

As most of you know, I spent 2016 in a state of flux when it came to my health and diagnoses. After a second opinion, a detox off of all my medications, new symptoms, new treatments, tests, etc., I did finally receive a new diagnosis, and ultimately, a much better path of care and disease management. At the end of 2016, I was officially diagnosed with Rheumatoid Arthritis instead of Ankylosing Spondylitis. 
I honestly can’t explain the relief and happiness that comes with that official distinction. That probably sounds strange to be grateful and happy about something that isn’t necessarily “good” news. But the fact of the matter is, thisdiagnosis has answered dozens of questions that have been inexplainable and unanswered for the past 5 years. To have a name to EVERY symptom I’m experiencing is something I thought I would have to give up on attaining. It’s unbelievably calming just to have a name, a diagnosis, and the right one, finally. 
In addition to that, I have a treatment (a new biologic/anti-TNF blocker injection specifically for RA) that is working. And legitimately working, not just taking the edge off. My inflammation levels are 10 and below; to put that into perspective, a healthy person’s inflammation levels should be 3 or below. Before this, mine were over 200. Suffice it to say: we’re officially in the positively managed disease range. Most importantly, I’m feeling better than I have in an entire year. That’s not to say I have zero symptoms and I don’t still have bad days: let’s be real, these diseases aren’t going to hibernate that well. But I can’t ask for better management than I have currently. 
Another plus is that because the treatment is working so well, I’m able to ween off of the chemo injections too. I’m already down to a half dose for those shots, and depending on what my blood tests show in a couple weeks, I will come completely off of chemo. By June 15, I will more than likely be chemo-free!
All rambling aside, that’s about where we’re at in this health journey of mine. I honestly couldn’t be happier about where I am right now. I just cross my fingers that my body will allow Actemra (current biologic I’m using) to work for years to come. Fingers crossed, folks!

As always, xoxo

Chronically Kristin

Staying M.I.A. Just A Tad Longer…

I know it has been quite some time since I have written here, and I wish I could tell you that I have a lot of fun posts coming up for you!


However, I will be taking an extended break from this blog in order to focus my attention and energy (or lack there of) on my health and chronic illness situation. Please feel free to reach out to me on social media, or by email or text. I’m more than happy to chat, but just won’t be writing about my health through here for a little while.

@KristinMCoppens (same username for all social media channels)






Chronically Kristin

An Open Letter To: ____ (The World Around Me)

Poster-6Have you missed the previous posts for the #SelfCareMvmt? Take a look at weeks 1 – 5 below:


I have talked a lot about this in the past. When you have chronic illnesses, the difference between visible and invisible illnesses becomes a large part of your interactions with the world around you. It’s a conundrum because you want people to understand what you’re going through, yet you also don’t want it to be the first thing people notice about you.


In comes this very last blog post for the #SelfCareMvmt series, where I’m asked to write an open letter to someone in the hopes that it helps them understand some of the “unseen” challenges I have as a patient. For me, I think there are a lot of people surrounding us chronic illness patients that don’t really understand or can’t quite comprehend what we actually go through on a day to day basis. I think what I’d like to do in taking this opportunity to write an open letter is to be real honest about limitations, symptoms, and day to day occurrences for chronic illness. In doing so, this letter really becomes an open letter to the world around me.


Migraine.jpgWhen I talk about my chronic diseases and health problems right now, it’s a little tough to decipher because I’m in the middle of so many questions, unknowns, and tests related to me getting a second opinion. Right now, I have an immense amount of symptoms and struggles, but not very many answered questions or official diagnoses. Keep that in mind when I talk about how severe my limitations and symptoms are. I don’t envision this to be the case forever, knowing that I will get a better, more thorough, diagnosis and better treatment soon. And chronic diseases also ebb and flow, meaning the symptoms I have today are not necessarily the symptoms I will have next month, next year, or 20 years from now. The beauty of rheumatology, right?


So what is it like to be me every day? It’s a lot like a 28-year old’s mind stuck in an ailing 85-year old body. Let’s get pretty real around here–I am probably one of the most stoic people you will ever meet. In fact, of the handful of therapists I’ve had in the past 6-8 years, every single one of them has uttered those words: “You are an extremely stoic person; that brave face you put on does wonders to fool everyone around you.” Take that as you will, but to me it’s both a positive and a negative. I am stoic. I do put an extremely brave face on for probably 95% of the time. In some ways, that brave face lets me have a successful career, interact with my friends, and simply get out of bed every morning. That brave face keeps me externally sane. The fact that I remain stoic fools people into thinking I feel pretty good and that my health isn’t bothering me that much.


Here’s the truth behind that: fighting to keep a brave, stoic face is what keeps my head above water. My symptoms are like nothing you can imagine. So at night, and on the weekends, I’m often too damn exhausted to keep that face on. I often end up in bed all weekend and/or sleeping a ton. It’s not so much that I don’t want people to know how bad my health problems really are: I obviously have no hesitations on sharing personal details of my life. I think it’s more for myself than the world around me. I want to prove to myself that I can be successful and that I can win in the face of serious physical (and sometimes mental) adversity. In order to do that, I have to succumb to the symptoms when I have my down time. It’s exhausting.


Untitled designIn keeping with the phrase “an open letter,” here are what my symptoms really feel like. No faking, no toughing it out, no masks. I’ll be talking about my symptoms outside of official disease names since so much of that is back to the drawing board for me. In terms of back pain, I typically have this every day. If it’s my lower, lumbar spine pain, then it feels like someone took a block of knives and just stuck them all in my lower back. In terms of the thoracic, mid-spine pain, that’s usually compared to wearing a belt or something far too tight right around my chest. When I try to breathe deeper, it feels like the inside of that belt has sharp points that dig into my ribs. Moving on to my hips–surprisingly this is what actually made me head to the doctor for the first time 5 years ago. The hip pain feels like flu body aches the majority of the time; sometimes it ends up as sharp pain, but it’s mostly throbbing, and it makes it difficult to walk normally a lot of the time. In fact, lately I’ve been contemplating whether or not I need some sort of walking assistance for when the pain is that bad (like a cane). I still don’t know how I feel about that–but it’s something I will probably bring up to my doctor on if there is any benefit to it or not. I’ve been having trouble walking without my legs (hips, knees, and/or ankles) giving out or being in extreme pain lately. So no, I’m not lazy–I just try to protect myself from exacerbating my symptoms as much as I can. When I say that I can’t, it’s not an exaggeration or an expression, it’s that I really can’t at that moment. Some people in my life are more accepting of that fact than others, but I have learned to stay true to what my body needs regardless.


Now that we’ve covered the core areas of the body, I can talk more about the peripheral joints, like hands, wrists, knees, ankles, feet, maybe shoulders. These joints are, again, less of the stabbing pain, and more like the throbbing body aches. Often along with that I get the burning nerve pain where it feels like my joints are on fire, but that they are also cold–think Icy Hot, and not in a good way. I guess that goes into the widespread body pain that I have. The nerve pain I mentioned occurs all over my body in varying degrees of severity. On really bad days, it actually hurts to wear clothing–in fact, my hair actually hurts, and yes, that’s a real thing. Look it up. I tend to have sensitivity to touch, relating to this. For example, when I reach to itch the back of my arm, it actually feels like I bruised it afterwards.


The temperature fluctuation is another fun one! In the recent years, I have developed a part of my immune system that is unable to regulate my body temperature. In other words, there is actually a temperature control bit of my system that is missing. This means that as much as I love summer, I really can’t handle it anymore. So when you can’t believe why I’m not outside enjoying the 80 degree weather, it’s because in 10 minutes I’d feel like the world is closing in around me and I’m going to pass out. Yay!


Lastly, let’s cover the less obvious parts of the body symptoms. I’ve recently developed digestive issues. Bad stomach cramps, etc. We haven’t yet explored that one, but it could be due to the inflammation in my body. Lots of preliminary studies show a link between gut issues and inflammatory diseases and/or autoimmune diseases. Additionally, my energy levels and fatigue are horrible. The lack of energy and severe fatigue are really hard. It can be physically painful for me to not allow my body what it wants: sleep or rest/laying down. I am often to the point where I am so exhausted that I’m in tears. And keep in mind, that’s after the fact that I typically get 8-10 hours of sleep a night. All of these symptoms definitely do not help my depression and anxiety either, but it’s a cycle. They both cause the other one, so to speak.


An open letter to the worldIn saying all of this, once again, I’m not looking for sympathy, I’m not looking to get attention. As I explained above, I obviously remain stoic and the exact opposite of how I feel in order to avoid a lot of that. Nevertheless, I think it’s important, especially if I’m trying to write an open letter to the world around me, to be completely honest and real with all of you. It’s really not fun to live in my body every day. But I also know that I have to make the best of it, so I tend to put that brave face, or stoic personality, on in order to trick myself into keeping my mind off the symptoms. Like I said, it’s really more for me than for you. But there is still that part of me that wants people to see me as Kristin, and not as Kristin, the girl with multiple health problems.


I urge you to ask me about all of this. If you aren’t sure what it feels like, just ask me. Don’t assume. I’m obviously an open book, and it’s one of my missions to enlighten the world to chronic pain and chronic diseases. Believe me, people like me are more common than you would think.



Chronically Kristin




P.S. As we wrapped up the #SelfCareMvmt series in blog form, I urge you to attend the Self Care Summit in Toronto on June 27th! This is the first event of it’s kind, put on by Self Care Catalysts. I’ll be there speaking about patient experience and sharing my story, so I hope to see you there! If you can’t make it in person, I hope you’ll follow along on social media and interact with the conversation.

Werk, Werk, Werk, Werk, Werk.

I can’t believe we’re in the second to last topic for the #SelfCareMvmt series. I’ve been grateful to be a part of this series (and a part of the first Self-Care Summit–more to come on that, but be sure to register to attend!) because it has truly forced me to recognize what I do well, and not so well, for my own self-care. Last week we talked about psychological and emotional self-care, which you can read here if you missed it, and this week we’re moving on to workplace and professional self-care. (Read week one, week two, week three, and week four of the series to catch up!) Follow and join in on the #selfcaremvmt by searching the hashtag on social media.


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This is a little bit of a tough blog post for me to write: I am not the most successful at workplace or professional self-care (full disclaimer: that’s probably putting it lightly). I love my job, and I love my career even more. I feel so grateful for so many things that have to do with my professional life. I’m grateful to have a stable job; I’m grateful for my wonderful health insurance; I’m grateful for flexibility and understanding leaders and coworkers; I’m grateful to be able to do what I love every day. I fight hard to not let my chronic diseases stop me from working full-time or hindering my career growth and professional life. Nevertheless, there’s a balance that is not only necessary, but also difficult to achieve sometimes. I work in two industries that frankly don’t ever shut off: digital communications and healthcare. Don’t get me wrong: I love them, and I chose this. So I know what comes with the territory, but also what is necessary and what is overkill.


images (1)A great deal of my downfalls when it comes to workplace or professional self-care stem from my struggles with depression and anxiety. They might not be exact causes, but they play an indirect roll at the very least. I will be the first to admit that I’m my own worst enemy. I’m a perfectionist and a control freak. Like I said, full disclosure, right? I honestly want to do everything myself, because I know that I can do it the best. That’s not meant to sound cocky or conceited, but more to show that I have worked so hard to hone in on my skill sets, and I’m aware of the type of work ethic I put forth. I do give blood, sweat, tears, and 200% into everything I do in my job and my career as a whole. I know the type of dedication I portray and the level of effort and expertise I provide. It’s not about being cocky, it’s about knowing what I’ve worked for and understanding the effort I will put in. Now, none of these are bad traits to have–and I know that I have gotten where I am today, and will get where I want to be, because of them.


However, there are still negative aspects of those parts of my personality. And that’s what I’m in no way afraid to admit that I struggle with, but that I am truthfully working on daily. I know that delegation, relinquishing control, and trusting others are all necessary and pertinent aspects of growing my career. I am working hard to learn how to not only relinquish some control over my work, but to also ask for help, or say no when applicable. I may not ever fully trust others over myself for tasks and projects, but that doesn’t mean I can’t get where I need to when it comes to honing in on the negative parts of these traits and characteristics.


imagesEnough about that, but it does provide an important lead in to talking about my own workplace and professional self-care. As I stated, this is really difficult for me, so I’m a work in progress. I don’t always practice my own advice all that well, but I promise that I’m trying! So what are some of the things that work for me? Honestly, I’m a complete workaholic. I enjoy working, and not only do I put in a lot of hours for my full-time job, but I have a lot of freelance contracts on the side. In saying that, it’s extremely important for me to learn how to and practice disconnecting. Digital communications is an industry that never shuts off; if you wanted to, there will always be work to do and something to pay attention to. However, you have to learn priorities. For example, I know that I am someone that sleep is number one. I don’t really let anything or anyone interfere with the amount of sleep I get. So staying strong on that is a huge priority for me, and actually allows me to practice better self-care when it comes to work.


downloadAnother part of that professional self-care is taking breaks. My brain can only handle so much social media, or so much writing, or so many numbers and graphs for analytics. Taking a break and just breathing, or going to the bathroom, or walking around the office is essential for me on a daily basis. I just can’t spend 12 hours straight on a computer. One of my favorite ways to take that break is just to take a second to chat with a coworker. I work with some pretty amazingly smart, creative, and fun individuals. Taking a second to talk about your weekend, or their significant other, or what have you, just allows both of you to step back and see perspective into what we do every day.


EW-AS563_Cover__J_20141231081056One of the best things that I’ve begun to practice for better workplace and professional self-care is taking advantage of being on call or off call. My coworker and I have implemented this and we alternate weekends being on-call. I will tell you, when I’m not on call, I have the most digitally detoxing weekends of my life. I have started to really see the benefits of doing this and it tends to recharge my brain just enough to start over again on Mondays. It’s hard to disconnect in a world of social media and digital communications, especially when that’s your job, but I can’t stress enough how important it is. Another aspect of this is that I try to be very present when I’m with other people. Honestly, no one is on their phone and on social media among my friends and loved ones more than I am. So when I spend time with them, I really try to stay off my phone. Let’s be honest–I’m going to check it here and there, but having it super-glued to my hand is no longer important to me.


All of this is to say that not only is this important for emotional health, mental health, professional and workplace health, but also for physical health. When I take the time to breathe, take a break, engage with coworkers, detox from digital, or just focus on something else, there is a grander goal of managing my chronic illnesses as well. Stress is one of the worst things for chronic disease symptoms (and believe me, I am nowhere near managing my stress to a healthy level), so it’s extremely important to take perspective and try to get a handle on those aspects of life at work. So if you’ve mastered this, what’s your secret? Share in the comments below!




Chronically Kristin

A Health Update: Off Meds

It’s been a long time since I’ve written a true health update here. However, while a great deal has happened, there are still no answers or conclusions to share with everyone. Maybe that’s why I’ve been avoiding writing about this–I still have so many unanswered questions. But for my own benefit of recording my health status accurately, and to catch us all up to at least where we stand today, it’s important that I share what I know thus far.


11120538_10102500000810355_6358796230381208007_nAs I shared in a few previous blog posts, I visited UofM Hospital in March for a second opinion in Rheumatology. Long story short on that visit: I was, and still am, very impressed by the team of physicians and my new physician specifically. Not once has anyone been that thorough and inquisitive towards my healthcare, besides myself of course! After a plethora of x-rays and vials of blood, I waited to hear back and went back to some of my local physicians to transfer some scans that were still missing at UofM. My x-rays looked healthy (good, but curious, news), but my blood tests results were a hot mess.


The first step was to try a medication that is typically used to treat Gout, but was offered because of my high uric acid levels. The first thing my new physician said was, “This is not a treatment.” The first of many to come I’m sure–but I was to think of this medication as a diagnostic tool. After two weeks on the medication, I reported back that I felt nothing positively or negatively as a result. Okay, cross that off the list. Next steps: I more than likely was testing positive for Lupus; however, the anti-inflammatory medications I’ve been on for years (Enbrel, Humira, and now Remicade) are known to cause Lupus and/or cause a positive test of Lupus. So that’s not concrete enough yet. And UofM was STILL waiting for one more scan from my local doctors.


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Moving on, the next thing we tried brings us to present day. I was taken off of all anti-inflammatory medications. So that means no infusions, no shots, no NSAIDs, no pain killers. No Remicade, no Methotrexate (Chemo), no pain relievers. I knew that this option was more than likely coming at some point, and I was terrified. Let me explain: I think this was a very smart move, a move that could truly give my body the chance to show us what was going on and let us find the answers. My body has been chock full of those medications for almost 5 years now. On the flip side, I was scared of the symptoms and scared of the amount of pain that might come. The goal of doing this is to see how my body responds: if I felt the same, then we know these medications aren’t working for me; if I felt worse, then we know my body needs anti-inflammatories but that it’s a question of what kind and what for; and if I felt better, then that’s a whole other ball game.


That brings us to today. I have been off of the Methotrexate for 1 month now. And I have been off of the Remicade for 2.5 months now. And how am I feeling? In all honesty: complete shit. But let me explain that. The only memory I have of how I felt on no treatment and medications is from before I was first diagnosed, at my very worst. So you can understand why I was expecting tremendous pain and was terrified that I would not be able to get out of bed. That’s how it was before I started treatments almost 5 years ago. Now, don’t get me wrong, I feel terrible, but here’s the surprising part. I feel terrible and have symptoms that I did not even know existed. The type of pain and the amount of symptoms I have now are so much different than how I felt when I was fighting for a diagnosis.


Hardships often prepareordinary people for anextraordinary destiny..pngI still have immense lower back and spine pain, and my hip pains are back; I’m not surprised that that came back. I also have severe Fibromyalgia symptoms, which I am also not surprised about. But here’s what I didn’t expect. The thoracic spine pain: which is basically the middle of your back where your ribs meet your spine, is horrible. It’s a heaviness in my chest that I have never felt before. It’s a belt around my chest that is such an indescribable feeling. And the cracking of the joints and knife-like pains are new. What else is new? Digestive issues. Stomach pains and cramps after eating. Not being hungry. Other digestion issues that come along with that…. And the last symptom is really tough–it’s almost related to my fatigue but it’s a bit different than that. It’s more debilitating. What it feels like is that my entire body, my joints, my limbs, everything is just so heavy and painful. It hurts to move much. It’s hard to walk longer than a block or really just stand on my feet more than 5-10 minutes. And I know that I’m out of shape, I’m certainly making no excuses for that. However, this is just so different from that type of feeling.


So I’ve been chugging along, remaining as strong as I possibly can through these symptoms, just keeping my eye on the prize. A few of the last weeks off of medications here have been some of the hardest weeks of my life. I’m almost grateful for the stress and busy manner of other parts of my life because it’s been a welcomed distraction. I don’t know what all of this means, and I am starting to believe that we have not even come close to my true diagnoses over the past 5 years. We might have been masking a lot with strong medications, and that’s not to say that those types of medications aren’t needed. I might have to go back on them, or a different variation of them. But I think I forgot what was a side effect and what was a true symptom.


The next step is that the doctors at UofM have finally finished re-reading all of my scans from the past 5 years. And just a couple days ago I sent my rheumatologist there an update of how I’ve been feeling off of meds. We’ll see what the next steps are, but my gut (my suddenly messed up gut) is telling me I may have been misdiagnosed.

Unfortunately, that’s about all I can tell you for now, because it’s all I know myself. I look forward to what happens now that we have tried life with no medications. Once I have more information, some diagnoses, maybe even some new treatments, I’ll post another update. Until then, fingers crossed for at least some answers in the near future.





Chronically Kristin

Going Mental For My Mental Health: #SelfCareMvmt Part 4

Welcome to another week of the #SelfCareMvmt! This series on self-care is such an important one for chronic illness patients. It sounds counterproductive, but chronic illness patients tend to let self-care fall by the wayside, when we’re the ones who need it more than normal! I’m definitely guilty of this, so this week we’re talking about psychological and emotional self-care. If you’ve missed any of the previous posts, read week one, read week two, and read week three to get yourself caught up! Remember to follow the movement from Self Care Catalysts on social media with #SelfCareMvmt.


I’ve never shied away from that fact that I struggle with significant depression and anxiety. Both lifelong issues, they never became truly intrusive to my day-to-day life until I was diagnosed with chronic diseases. Though separate diseases, depression and anxiety go hand-in-hand for me. I never understood the impact of mental health on quality of life and on physical health until both really started to rule over my life. That’s not to say they still do, or that they don’t; it’s a work in progress really.



As anyone that struggles with clinical depression and/or anxiety will know, it can be a monthly, weekly, or even daily battle. For me, the depression ebbs and flows, but it’s always there, like a creepy lurker. On the other hand, my anxiety is more present and glaring, at least currently. I’ve always been an anxious person, but I’ve noticed more in the past year how it actually impacts my physical health. I’m not going to sit here and give you some sort of miraculous and enlightening advice on conquering mental health and depression and anxiety. Honestly, because it isn’t always something you can conquer. I’m getting real on you here: something it’s just something to live with in the best and healthiest way possible. And for me, that’s how it works. I have surrendered to the concept that I am someone that battles depression and anxiety. Sometimes it’s debilitating, but most times it’s just like a tiny itch that won’t really go away.


In saying all of that, there are really beneficial ways to improve your quality of life when dealing with depression and anxiety, or other mental health conditions (but I can honestly only speak about depression and anxiety in my experience). I am a firm believer in anti-depressants and therapy. The combination of those two treatments have had the biggest impact on the management of my psychological and emotional self-care. I have been on anti-depressants on and off for about 4-5 years now, and I can speak from experience thathealth storylines app I am hands down better when I’m on them. They aren’t perfect, and they aren’t a miracle drug. But I have gone off of them and NO THANK YOU! Anti-depressants are truly a personal journey and also filled with trial and error. I’m not sure that mine work the best for me, but at this point, they work well enough to avoid the process of weaning off and trying a new type. At least for right now!


Adding therapy to the treatment is also extremely important for me. It’s not about talking about some huge damaging life event (although some depression and mental health is more about that); for me it’s almost like maintenance. Some weeks it’s just a vent session, and it’s nothing significant. But other weeks it’s truly trying to get out of the dark places, or trying to handle situations that arise in life in a healthy manner, rather than either shutting down and/or letting anxiety take over. I strongly believe in the power of therapy. In fact, I really think everyone should see someone on a regular basis; there are far too many people out there who feel embarrassed or too proud to see a therapist. And honestly, get over it. Mental health is just as important, if not more, to your physical health check-ups.



Aside from medication and therapy, there are also a few things I introduced into my life to help with the day-to-day management of depression and anxiety. I’ve talked about the Health Storylines app before, but one of the biggest benefits of the app is allowing it to become a sort of daily mental journal and check-in. Reminding yourself to record your daily moods, or just to check in every so often on how you’re feeling emotionally can have such a positive impact on chronic illness. As cliche as it sounds, chronic life is a marathon, not a sprint. Taking one day at a time can make a world of a difference. The app’s Daily Moods allows me to really take a look back and see how my depression and anxiety are being managed. Sometimes I think everything is okay and perfectly managed, but then I look back at the history in the app and realize, oh, maybe I had more bad days than I acknowledged. It’s a true benefit to holding myself accountable for my mental health status as well.


Managing your mental health is a truly personal journey. Nevertheless, I really do believe in the power of the simple things. Here’s what I mean: spend time with your friends, laugh, laugh even more, cry if you need to, sleep, find ways to reduce your stress and relax, watch trashy television shows, sleep some more, etc. All of those things not only help manage and treat depression and anxiety, but sometimes it’s just as simple as taking your mind off of things! My theme for this #selfcaremvmt series has really been about being kind to yourself, and I wholeheartedly believe that’s what managing chronic diseases is all about. Give yourself a break and cut yourself some slack!


What are some of your tried and true methods for practicing psychological and emotional self-care? Leave your experiences in the comments below!



Chronically Kristin

Guest Post: “Addressing Chronic Illness Through Advocacy Activities and Skills”

Hello everyone! I have a special guest blog post this week from Dr. Elizabeth Kelly, and her blog: Having Community-based Conversations around Human Services through Listening, Engaging and Connecting (HCCHSLEC). I’m excited to share her point of view with you as she comes from a place of understanding chronic illness through being a mother and a community-based nurse. Be sure to follow her blog and follow more community-based conversations through her Twitter account



unnamedChronic illness is a significant, yet quiet health issue currently occurring within the current United States healthcare system. It is defined as an illness lasting longer than three months and is not self-limiting; it affects almost half of the United States population and accounts for three-fourths of health care costs in this country. (Von Korff, M, et al. (1997)


I came to understand this definition and its application when our six-week-old son received his first asthma diagnosis. I dutifully followed every medical treatment including washing the walls and floors of the baby’s room daily, using special room filters, and limiting visitors because “he would out-grow it.” Many other medical treatment suggestions followed, all with the same health outcomes. He wheezed, coughed, and cried for years. As he grew and started attending school he often asked “why can’t I keep up with the rest of the kids?”


The most reliable source I found to understand our son’s disease over time was the wisdom and experiences of other mothers with children who also struggled with the disease. We put our heads together, shared information, followed and documented medical treatments, and compared notes on our several children. What we discovered is that we lacked advocacy skills that better prepared us for the long-term implications of the disease, how it cycles through each child’s life and development, and the long term effects of the variety of treatments received.


While trying to understand asthma as a disease, I also found I was missing my role as a support and advocate for my child. Other mothers asked similar questions, “What am I not understanding about the doctor’s treatments,” “how do I ask the physical education teacher to consider exercise and endurance levels?” Sharing these experiences with other mothers helped me to begin a learning process by discovering the definition of words I was using.


Advocacy involves the “efforts of an individual or group to effectively communicate, convey, negotiate, or assert the interests, desires, needs, and rights of the individual or group of individuals speaking on behalf of or in support of themselves or another person.” (


One who participates in the activities of advocacy is identified as an “advocate,” a “person who speaks up for, and defends the rights of him or herself, or of another person. (


Discovering the meaning of each term sets into motion improved advocacy activities and skills.


The activities involve a variety of skills necessary for the advocate(s) to understand, apply, evaluate, and assess for next steps. The overarching framework for these activities is collaboration, which involves knowledge of 1) the patient, both short and long-term, and 2) the disease of the patient. Also included in collaboration efforts are the patient’s family, healthcare services, and supportive services. Because of the current changing nature of patient care, it is important to understand and plan advocacy strategies that relate to the patient’s goals, who will be involved in achieving the goals, levels of expectation, and methods by which to monitor both the standards of care as well as that of the patient’s care status.


This framework for advocates is also “keen to communicate with health policy members at the local, state and national level, and follow legislation that has both direct and indirect influence for the patient.” ( Evidence for this level of collaboration recently appeared while discharging a patient from the hospital. Although the hospital was aware that a state healthcare policy, related to the patient’s ongoing care had lost its funding, the patient left the hospital without information about the policy change. After several days of waiting for service delivery, a family member learned about the policy change. Several days later and numerous phone calls by the family to both the hospital and legislative representatives, advocacy activities shifted to agencies that could provide the equipment. As the family reflected on the circumstances to a newspaper, they said: “never again will there be trust between us and those who provide health care.”


Practicing collaboration includes ongoing knowledge-based communication skills at all levels of activities and with all participants. With the patient as the center of focus when planning care, listening to the patient’s experiences sharpens the care plan. Drawing on a variety of voices that contribute to the care plan reveals innovative opportunities for care. From the discovery and inclusion of innovations comes new data that enables decisions to shift patient needs and help avoid medical errors.


At the same time that patient care is being monitored, evaluated, and reported, information from the activities and strategies is gathered. Sharing the information is an important advocacy strategy because knowledge is power and when individuals receive knowledge, communication improves, new questions develop, and meeting daily challenges with the new knowledge allows for an expanded discussion with others, their experiences, and their strategies. Sharing knowledge strengthens and gives voice to the community that currently remains in the background while costs rise.


Advocacy is a vehicle to raise the volume of quiet voices for those living with chronic illness and who find themselves overlooked, misjudged, and misguided. Collaborative activities and strategies provide guidance toward increasing knowledge of the patient, keeping the patient at the center of the care process, and care providers aware of how the patient progresses. Communication between the patient, family, and various support systems leads to discovering innovative best practices for a patient over time. Now is the time to enhance everyone’s voices that find themselves caring for those with this type of illness.





It’s so important for us to understand different perspectives as patients, providers, loved ones, friends, and caregivers of chronic illness. Thank you so much to Dr. Kelly for sharing her perspective! If you’re interested in guest blogging on Chronically Kristin, please send me an email:





Chronically Kristin