Staying Positive With Chronic Disease


How do you stay so positive through your hard times?

Rebloggable by request after the question was posed here.

I started by redefining the word “positivity.” I used to think positivity meant obnoxious optimism and being happy all the time. I thought it meant not acknowledging the negative or being able to turn the negative off, so to speak. I thought it was something that some people just had, and either you had it or you didn’t— and I sure as hell didn’t.

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I was wrong. Staying positive requires hard work! Positivity (at least for me and my situation) is about being healthy mentally, making healthy and proactive choices when dealing with terribly unhealthy physical circumstances. It’s about taking the waves as they come. It’s about stopping to smell all of the roses in the garden and remembering that even when there are no roses to be found, they will bloom again. It’s about noticing and appreciating little things— finding a handicapped parking spot on campus, a good hair day. 

It’s about hope.

I don’t smile all the time. I am not happy all the time. I don’t love my situation and I’d be lying if I said I wouldn’t jump at the chance to live a “normal” life. And I don’t believe in shoving that kind of optimism in the face of my readers or sugarcoating these diseases because it’s just not real when your disease(s) cause the kind of symptoms many of us experience (sometimes that kind of optimism/positivity is, quite frankly, insulting and invalidating). But this is my life and it’s going to pass me by even if I spend the next 10 years being miserable, so I choose to redefine it.

And for the record, you don’t need a life changing disease to make the choice to see the world through a fresh pair of eyes. 

I surround myself with people who lift me up and make me laugh. It took a really long time to put together a support network that was the right fit and healthy, but it is imperative. 


Humor (often strange and inappropriate) and laughter are the best medicine. I try to laugh at myself and my situation as often as possible. It doesn’t make it any less of an awful disease or hand of cards, but it makes it easier to deal with.

I have friends who look at it the same way. Having friends who can make inappropriate jokes about my situation— being able to laugh at things like shitting my pants in the grocery store or being called a sloth, or at a rash that makes me look like a lobster— helps me remember that everyone has something.

So I laugh about it. I also cry when I need to and do not let anyone invalidate my tears. I get depressed. I get sad. I get angry. Some days I wake up and don’t choose positivity; some days, I choose to wallow. But even when my circumstances keep me down, I hold tight to perspective that there will be kinder days, and I will pull myself above water and go smell the roses again, even if it takes a little while. And it’s okay to use a life jacket if you can’t get your head above on your own. Ask for help.


To me, that’s what positivity is. It’s a choice I make to keep a healthy perspective and be proactive, even when I am at my lowest point. It’s a lens I see the world through. It is a way of life.

Come chat with me on May 19th-20th for World Autoimmune Arthritis Day! We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.
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Come chat with me on May 19th-20th for World Autoimmune Arthritis Day!

We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.

Memorial for Laura Kenyon, author of Still’s Life— May 10th, 2013

For those of you that didn’t know Laura or of Laura’s advocacy work, please go and check out her blog, Still’s Life. She said it herself, she was a glass half full kind of girl. She was always there with snark or sarcasm, or a terrible pun to ease the pain and embarrassment of some of the symptoms patients like us go through. Despite the incredibly aggressive nature of her disease (not to mention the comorbid conditions), she managed to remain thankful and thoughtful in the darkest of days. I know I am not alone when I say that her ability to keep that glass half full and the grace with which she endured her Still’s Disease inspired (and still does) me to get up and live regularly.

Laura’s story, though incredible, is not unheard of in the autoimmune community. She had tried biologic after biologic; Orencia, Kineret, Enbrel, you name it. She would find temporary or limited relief and eventually end up in a serious system flare, hospital bound. Finally, Laura had run out of biologics to try and her last option was a radical one: extensive chemotherapy to eradicate her existing immune system and undergo a stem cell transplant.

Laura never made it to her first chemotherapy appointment. She also never made it to her wedding. But she was the only person I know who could possibly manage to plan both a wedding and a stem cell transplant at the same time. 

On May 10th, at 4pm UK time (11am EST), we will hold a memorial of sorts at the For the Love of Laura memorial Facebook page for 10 minutes. Please stop by, share a memory, share your sentiments, share a moment of silence, anything at all. Take a moment and say a prayer or kind thought for her and her loved ones— her fiance Matt especially. 

If you’re an Arthritis advocate, take a moment to remember that you are helping to carry on Laura’s legacy. We as patient advocates do not just advocate for ourselves. We advocate for an entire community of people, and we advocate for those in our community that we have lost— whether we realize it or not, we carry on the legacy of the advocates before us. On May 10th, we will remember and acknowledge Laura’s advocacy. 

Please reblog, retweet to spread the word and to spread her story.

Will you join us in celebration of an incredible woman who left an incredible legacy behind?

World Autoimmune Arthritis Day 2013: Free Registration! Spread Awareness and Participate from Home!

It’s time! The second annual World Autoimmune Arthritis Day (WAAD) will be held on May 20th, 2013!


Hosted by the International Autoimmune Arthritis Movement, this year is going to be bigger and better than before— 3x the size of the 2012 event! Join those of us at IAAM and WAAD to shine a light on Autoimmune Arthritis!

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What is WAAD?

  • WAAD is a 47-hour, global time zone, virtual awareness convention where patients, patient experts, health care professionals, nonprofit organizations, loved ones, and supporters to come together to spread awareness and education of Autoimmune Arthritis. 


How do I get involved?

On the day of the event, log on and explore!

  • Live Chats held by ePatient experts-- watch and participate in live chats on a variety of topics. Yours truly will be hosting a presentation and live chat on self esteem/self love, so make sure you stop by and chat with me!

  • Presentations by patient experts on a variety of topics, all dedicated to aiding the Autoimmune Arthritis patient.
  • Vendor booths

  • Resource Library with hundreds of patient resources and a blog list for Autoimmune Arthritis patients and their loved ones

  • Ask the Experts Panel-- connect with health care professionals and submit your questions

  • Patient Nominated Best of the Best Rheumatologists— a list compiled by patients of the best rheumatologists. Looking for a new rheumy? Stop by and check out the list. Nominate YOUR rheumatologist here!
  • 36 nonprofit organizations will be holding booths from all over the world, from South Africa to New Zealand!

  • The Lounge— an open chat to connect with other WAAD attendees and Autoimmune Arthritis patients.

  • Check out the WAAD Android Apple app: A Day in the Life With Autoimmune Arthritis (!)

  • Enter the WAAD2013 Raffle and much more



What is Autoimmune Arthritis?

  • Autoimmune Arthritis encompasses: Rheumatoid Arthritis, Juvenile (autoimmune) Arthritis (JIA/JRA), Still’s Disease, Mixed Connective Tissue Disease, Undifferentiated Connective Tissue Disease, Lupus, Ankylosing Spondylitis, Psoriatic Arthritis, Sjogren’s Syndrome, and more.

  • Read more about types of Autoimmune Arthritis and other related conditions (e.g., Vasculitis, Inflammatory Bowel Disease).



How do I sign up?

We want to see YOU there! Reblog, retweet, follow along on Twitter, and spread the word! Will you be attending WAAD 2013?

On the Radar for May Awareness Events! Get Involved, Get Educated, Get Empowered!

I’m baaack! Final exams are over, I moved out of my horrible apartment complex, and am home in south Florida for a little while to regroup, see doctors, and focus on May advocacy events.

Speaking of advocacy events, these should be on your radar this month:

  1. World Autoimmune Arthritis Day! May 20, 2013— second annual WAAD! This time, it’s going to be twice the size of last year’s event! I will be giving a presentation on self esteem, self love, and autoimmune arthritis. More to come about how to register (it’s completely free!), what you can expect, and how to attend from the comfort of your couch!* Not sure what qualifies as Autoimmune Arthritis? Learn more here!

  2. For the Love of Laura. If you don’t already know, there has been a facebook page established in Laura’s (of Still’s Life.com— you can read more about her here) memory. On May 10th, there will be a 10 minute memorial/moment of silence and Laura’s family asks that you attend the page for the event. Please stop by and share some love, a kind story, or little bit about how Laura’s blog/story reached you. More details to come.

  3. Arthritis Awareness Month— this year’s theme is I Am the Face of Arthritis. More info soon about how to participate and what you can expect here on Chronic Curve to celebrate the month.

  4. World Lupus Day— May 10th, 2013. Don’t forget to sign the awareness pledge!

  5. World Ankylosing Spondylitis Day— May 4, 2013! How many of you Walked Your AS off in celebration this year? 


Check back shortly for more event pages this week.

Health Activist Writer’s Month Challenge 2013: Day 14

Day 14— April 14, 2013

Today’s Prompts:

  • Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle.  Share your love.
  1. Laura of Still’s Life. I’ve written about Laura before here on Chronic Curve. Laura’s blog was the first resource I found after receiving my own diagnosis of Still’s Disease. It wasn’t long after that I connected with Laura personally. She was an incredible patient advocate, one who always had the ability to laugh through the ugly parts of this disease— something she taught me how to do by example alone. Laura was as powerful in death as she was in life and a fighter until the very end. We love and miss her so very much.

  2. Kelly of RA Warrior and Rheumatoid Patient Foundation. Before I had a solid diagnosis, I had a big hunch that I was dealing with some type of Autoimmune Arthritis (medical background here). Her website allowed me to take information to my surgeon (my first step into the world of being an empowered patient), who was the first person to suggest that Rheumatoid Arthritis might be the cause of my very swollen, painful hands. The information on that site guided me through my first months of treatment and allowed me to understand the medications and decisions my doctors were making surrounding my health. Her website was a huge tool in my becoming my own best advocate and for that (and her work for our community) there is no “thank you” that could ever suffice. I told Kelly recently she may just be superwoman. What she has accomplished despite her own disease is truly remarkable.

  3. Kirsten of Not Standing Still’s Disease. Again, just an amazing woman. I’ve followed Kirsten’s blog for some time and what really resonates with me is her ability to tell it like it is. I make a point not to sugar coat things. I make a point to share the “ugly” parts of these diseases that people don’t want to read or hear about. Putting that out there for thousands of people to read can be terrifying—it’s not easy to be vulnerable in front of over 22k people— but Kirsten’s similar attitude is always confirmation, motivation, and inspiration for me to keep on doing what I’m doing. I admire her strength, her wit, her work for our community. Her friendship was the greatest gift Laura gave to me— it was Laura’s death that brought us together. 

  4. Tiffany (and the whole team) at the International Autoimmune Arthritis Movement— IAAM has completely changed the Autoimmune Arthritis community. They welcomed me as a patient advocate and the network they create amongst organizations and patients through social media is extraordinary. IAAM has made incredible gains for awareness and funding, from their awareness hotline to World Autoimmune Arthritis Day, they are at the forefront of progress being made for patients like myself. Tiffany works so, so, so hard for the cause while battling Autoimmune Arthritis herself; her strength and ambition make her not just a superb health activist, but a role model for others.

  5. Britt of Hurt Blogger. Britt started her blog right around the time when I started mine. Her snark and sense of humor while dealing with Arthur reminds me to keep the same perspective. You just have to laugh. And when you can’t laugh, you have to call Arthur out on being the Asshole that he(it? she?) is. If you are not aware, Britt is making huge waves in the ePatient world. She spoke at Stanford’s Medicine X Conference last year about her journey with Autoimmune Arthritis and how the concept of “Arthritis” is so very flawed. She is a huge inspiration for me and I do believe that I am a better advocate because of her and the other health advocates in my life that inspire me.

I’d be here all day if I wrote about all of the health activists that deserve huge love and thanks, there are just so many people who have enriched my journey and inspired me along the way. This community is amazing and the fact that it spans across so many different patients with all different diseases just makes it that much more incredible.

Who inspires you? What health activists did you include in your Day 14 post?