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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.

image


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.

    • #Ask
    • #Chronic illness
    • #Chronic pain
    • #Rheumatoid Arthritis
    • #Disability
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #SLE
    • #Lupus
    • #Arthritis
    • #Fibro
    • #Fibromyalgia
    • #Ankylosing Spondylitis
    • #Sjogren's
    • #CFS/ME
    • #Endometriosis
    • #IBD
    • #Crohn's
    • #Ulcerative colitis
    • #MS
    • #CRPS
    • #RSD
    • #Scleroderma
    • #Positivity
    • #Motivation
    • #Inspiration
  • 1 week ago
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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!

image

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?

  • Easy! Registration is completely free. Submit your name, email, and a few pieces of relevant information here.

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

    • #Chronic illness
    • #Chronic pain
    • #WAAD
    • #Arthritis
    • #Medicine
    • #Health
    • #Rheumatology
    • #Disability
    • #Rheumatoid Arthritis
    • #Autoimmune
    • #RA
    • #JRA
    • #JIA
    • #JA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Lupus
    • #SLE
    • #Ankylosing Spondylitis
    • #Psoriatic Arthritis
    • #Juvenile Arthritis
    • #Sjogren's Syndrome
    • #Lyme
    • #Vasculitis
    • #IBD
    • #Crohn's
    • #Ulcerative Colitis
    • #Awareness event
    • #Fibro
  • 2 weeks ago
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Final Exam Check In: How are you guys?

Checking in! How are you guys doing? Are you hanging in there with final exams and flares?

Are any of you done with exams? Mine started yesterday— got a 92 on my first one! Only two more for me. What about you? Reach out if you’re struggling either here or on twitter with #spooniestudent.

What exams do you have coming up? How are you coping with chronic pain/chronic disease and your exams?

    • #College
    • #Education
    • #University
    • #Chronic pain
    • #Chronic illness
    • #Autoimmune
    • #Disability
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Lupus
    • #SLE
    • #FMS
    • #Fibromyalgia
    • #Fibro
    • #IBD
    • #Crohn's
    • #Ulcerative Colitis
    • #Endometriosis
    • #MS
    • #CFS/ME
    • #Scleroderma
    • #Sjogren's
    • #Ankylosing Spondylitis
    • #Arthritis
    • #POTS
  • 3 weeks ago
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It’s That Time Again: Final Exams and Chronic Illness

You know the drill. It’s a dreaded week and a half (or month if you start preparing in advance like some of us) for most undergraduate and graduate students, but throw a chronic illness or chronic pain into the mix and you’re in for a bumpy ride.

Gear up the tea or coffee, the pain meds, a comfortable study environment, and muster up all the strength you have!

      image

And in case you need a little help, here’s a repost of all of my College and Chronic Illness posts thus far.

  • College and Chronic Illness: Surviving Final Exam Week(s)

  • College & Chronic Illness: 19 Tips to Study Strong and Fight the Fog

  • Chronic Curve Study Space

  • Spoonie Student Group-- come join our group of chronically ill students supporting each other through university, exams, and other levels of education. We are proud supporters of caffeine and 3 minute dance parties. Tweet me and I will add you to our list.

You can see the rest of my college and chronic illness/pain-related posts here.

Good luck, keep calm, and may the odds be ever in your favor.

I will be back to regular posting in May! In the mean time, find me on Twitter, Instagram, and tweet me with #spooniestudent!

    • #College and chronic illness
    • #Chronic illness
    • #Chronic pain
    • #Final exams
    • #Education
    • #Study
    • #college
    • #Disability
    • #Rheumatoid Arthritis
    • #Arthritis
    • #Autoimmune
    • #JRA
    • #JIA
    • #Lupus
    • #SLE
    • #MCTD
    • #UCTD
    • #Still's Disease
    • #Spoonie
    • #Fibromyalgia
    • #IBD
    • #Crohn's
    • #Ulcerative Colitis
    • #Ankylosing Spondylitis
    • #Sjogren's
    • #Scleroderma
    • #Endometriosis
    • #ME/CFS
    • #MS
    • #POTS
  • 1 month ago
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Painsomnia Means it’s Q&A Time!

Since it’s 4am and pain is keeping me from sleeping, I’m going to be answering inbox questions for the next little while.

Now is a good time to submit if you need a quick response! You know, if you happen to be awake at weird hours like myself.

    • #Ask
    • #Chronic pain
    • #Chronic illness
    • #Autoimmune
    • #Disability
    • #Health
    • #Medicine
    • #RA
    • #Rheumatoid Arthritis
    • #JRA
    • #JIA
    • #Still's Disease
    • #UCTD
    • #MCTD
    • #Lupus
    • #SLE
    • #Fibromyalgia
    • #IBD
    • #Chronic migraine
    • #Scoliosis
    • #Ankylosing Spondylitis
    • #Psoriatic Arthritis
    • #CFS/ME
    • #CRPS/RSD
    • #Q&A
    • #Crohn's
    • #Ulcerative Colitis
    • #Trigeminal Neuralgia
    • #PCOS
    • #Endometriosis
  • 1 month ago
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Q:How do you stay so positive through your hard times?

Anonymous

I started by redefining my understanding of the word “positivity.” I used to think positivity was obnoxious optimism and being happy all the time. I thought it was something that some people just had.

image

I was wrong. Staying positive is hard work! Positivity, at least for me and my situation is about being healthy mentally 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 hope. So I don’t smile all the time. I’m 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. 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 just choose to redefine it.

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. 

My close friends and some family members keep me sane.

Humor 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 and 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— helps me remember that everyone has something. 

I just choose to laugh about it. I cry when I need to. I get depressed. I get angry. Some days I wake up and don’t choose positivity; some days I choose to wallow. But I always pull myself above water and go smell the roses again, even if it takes a little while.

    • #Ask
    • #Positivity
    • #Chronic illness
    • #Chronic pain
    • #Disability
    • #Autoimmune
    • #Health
    • #Motivation
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #Lupus
    • #SLE
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Ankylosing Spondylitis
    • #Endometriosis
    • #Arthritis
    • #IBD
    • #Crohn's
    • #Ulcerative Colitis
    • #Fibromyalgia
    • #MS
    • #CFS/ME
    • #CRPS/RSD
    • #Inspiration
  • 1 month ago
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Avatar A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.

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