1. How has your condition affected you?  Living with RA has impacted my life in many ways, both positive and negative. While I have had to give up some things that I used to love to do, I have gained a greater appreciation of myself and respect for my body. I am much more attune to my body, I eat healthy, and I maintain an active lifestyle though I am conscious of my limits. I have met some amazing people and made some wonderful friends through RA. I have become connected to the RA world here in New York and I try to stay informed and keep up with research, news, and treatment options. I am also not shy about talking about my condition and I have taken several opportunities, both formally and informally, to be an ambassador for RA. I feel that the more I talk about my experience and share my RA story, the more people will be aware of RA and the realities of autoimmune diseases.

2. What would you like for other people to know about your condition?  One of the biggest challenges of an autoimmune disease is that it is an invisible illness. While I look young and healthy, I am not always able to do things. It is especially difficult living in a fast-paced and aggressive city like New York. Having RA has made me much more aware of invisible illnesses and I try to be conscientious of those around me. Certainly for me the worst thing is being bumped or jostled on the crowded sidewalks. There have been times when I have been hit with a purse or a passing shoulder and this has sent me into a flare that can last several days. I always try to be aware of those around me because, aside from my own protection, every fifth person is dealing with some form of arthritis.

3. What would you like to tell someone who is recently diagnosed with your condition?

It gets better. Trust me.

I lived with symptoms of RA for about six years before I was finally diagnosed. I had X-rays, tried insoles in my shoes, saw different doctors until I finally met a doctor who truly listened to me. When she said to me, "I know what this is and I am going to help you" it was such a turning point in my life, a glimmer of light at the end of a long, dark tunnel. Getting that diagnosis really gave me hope. Knowing what it was that I was dealing with allowed me and my doctor to establish a course of treatment and work towards our goal of getting me back on my feet – literally and figuratively. Many people say that being diagnosed was a terrifying moment for them. But for me it was hopeful and almost liberating.

In terms of treatment, be sure to consider all of your options and don't be afraid to try new things. There are so many options available – both drug treatments and natural supplemental options – and so it is possible to maintain a life with RA that is free of disability and joint deformity. It is very important to establish a balanced course of treatment, so find the right drug cocktail and combine that with eating well, seeing your rheumatologist regularly, and then stay active and just keep moving!

Always remember that RA, or any chronic illness, does not define you but becomes a part of who you are. Once you can accept it for what it is, you will be able to move forward and learn to live with it.

Thanks so much Ainslie!! Name: RA Guy

Location: United States and Bolivia, South America

Age: 40

Diagnosed with rheumatoid arthritis at age 32. (Symptoms started at age 29.)

How has your condition affected you? I'm at a good place right now, and can definitely say that my condition has changed me for the better...although this hasn't always been the case. I've learned the beauty of slowing down, of going out to breathe fresh air, and of taking nothing for granted. I've also learned that so many people are there to help me and support me when I need it, and that counts for a lot. I'm in no way trying to underestimate the effect that the pain and disability has had on my life, which has been serious indeed...but as with anything else, it comes down to staying positive, and focusing on what I can control. I used to yearn for the life I might have had, had it not been for my rheumatoid arthritis...but I've since learned to appreciate the stronger person that I've become due to the health challenges that I face on a regular basis, and wouldn't change a thing.

What would you like for other people to know about your condition? I'm not a patient who suffers from rheumatoid arthritis. I'm a person who LIVES with rheumatoid arthritis.

What would you like to tell someone who is recently diagnosed with your condition? Things will definitely change more than you can imagine, and the pain will always be there...but with the right mindset and continued movement, there is a way to continue to live a happy and productive life. Use every challenge you encounter as an opportunity to learn something new about yourself. And always, always, always look on the bright side of things. It may not be easy, but it will be possible.

RA Guy’s Favorite Quote: "Go confidently in the direction of your dreams. Live the life you have imagined." -Henry David Thoreau

RA Guy’s Blog: www.rheumatoidarthritisguy.com Name: Megan

Location: Ottawa, ON

Age: 37

Diagnosed with Juvenile Rheumatoid Arthritis at age 16

How has your condition affected you? Significantly and every day would describe how I have been impacted by my RA. I have had a knee scope and two shoulder replacements. My shoulder disintegrated before my eyes, and I now beep going through airports. A couple of sentences cannot do justice to the impact joint replacement has had on my life.

There hasn't been a day in my 21 years living with it that I haven't thought about my RA. Can I do this? How much energy do I have? How sore will I be tomorrow? What is the tradeoff? It's only now that I have finally found a drug that works for me, am I thinking less about what I can do and focusing more on just doing it. It's a different struggle, and I am happier to face these challenges. But I still think about my RA every day.

What would you like for other people to know about your condition? Living with a chronic disease is a roller coaster. From one hour, day, year to the next. My emotions have ranged from rage to despair, hope to fear, joy to misery, jealousy to confident, exhausted to elated. It is emotionally and physically exhausting to have a chronic disease. My ability to care for myself and others has ranged from not being able to dress myself, comb my hair or walk to school, to being able to run a 5K race with energy and smiles to spare. I have learned, rather painfully, that there are limits your body puts on you, and there are limits you put on yourself. Only time, trial and error will help align what you want to do with what your body is willing or able to do.

What would you like to tell someone who is recently diagnosed with RA/JRA? Reach out and connect - - there are others in your local community and online who truly understand your struggles and triumphs. I took a longer road reaching out to the RA community, but I have felt nothing but support from everyone I know in the online community. Trust your doctors and follow your treatment  plan - to start. Over time, you will come to know your disease better and be able to make more informed choices based on what is best for you. Research your disease, learn everything you can - be an expert so you can educate others. Eat well and get lots of sleep. Share your struggles with others - family and friends want to help, they just need you to articulate what you need.

Megan's favorite quote: "What doesn't kill you, makes you stronger."

Megan's blog:http://sticks-and-stones-blog.blogspot.ca/

Thank you so much for sharing your story, Megan! Name: Margery

Location: DeWitt, NY

Age: 53

Diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome at age 50.

How have your conditions affected you? There are days when I forget about the RA and try to do something that used to be doable (such as walking outside in 90-degree heat, or helping to clear a hiking trail at our daughter's camp), and then suffer for days afterwards. Sometimes, my husband and daughter don't want me to come along on an activity because I slow them down. Name: Christina

Location: Fleetwood, NY

Age: 32

Diagnosed with Polycystic Ovary Syndrome at 25, Lupus at 29, Type 2 diabetes at 28 and Crohn's Disease at 32

How have your conditions affected you? Lupus is exhausting; I need to sleep at least 9 hours a day. Working in New York City as an Office Manager/Jill of All Trades/Marketing Assistant required far more of me than Lupus would allow. It was so refreshing when I got diagnosed with Lupus because I was justified in the pain I felt as a commuter. I didn't think I was old enough to have such back and leg pain from having to stand on the subway. I knew something wasn't quite right. Six years of that pain and exhaustion caused by Lupus led to anxiety which also led to a bad tempered commuter. I felt bad about needing a seat when I looked like a strapping young woman. It was a blessing in disguise when I got laid off from two jobs in the course of two years. Two companies' finanial troubles were my saving grace. Now working as a Nanny and a Tutor, I get the hours of sleep I need and have a significantly lighter commute. Name: Adina

Location: Los Angeles, CA

Age: 30

Diagnosed with Rheumatoid Arthritis at age 29 and Lupus at age 30

How have your conditions affected you? When I first found out, I went numb; I shut down emotionally and physically. For weeks I couldn't feel, taste or smell. I was in a haze; angry and ashamed. It took me a while to share the news with my family. In the early days of learning to live with this, I was forced to modify my work schedule and social life; I just couldn't keep up. Living with this has changed my lifestyle and how I do things, but not what I do or who I am. It forced me to re-evaluate my priorities and dreams, but never abandon them. It has made me look deeper inside and see what kind of person I am and how I deal with my challenges. I never gave up the things I love; I'm more dedicated to my yoga practice now than ever. I believe it keeps my body healthy and my mind strong. Every day is a test of patience, and I never realized my strength and perseverance until now. I've learned to embrace the challenges and find the beauty in it. This has taught me to be kinder to myself. Name: Jess

Location: Austin, TX

Age: 28

Diagnosed with Crohn's Disease at age 21

How has your condition impacted you? My condition has changed me in so many ways, but most importantly, it has helped me appreciate all the little things that happen in life. I have learned to cherish the good days and roll with the bad. My condition has also made me more aware of others coping with illnesses. It has made me take a step back and look at my life and be so thankful for everything and everyday that I have. Name: Brian

Location: Concord, CA

Age: 47

Diagnosed with Rheumatoid Arthritis and Degenerative Spondylolisthesis at age 38

How has your condition impacted you?  The greatest impact was the loss of a 20+ year career as a Union Ironworker. I loved being part of building the skyline of the San Francisco Bay Area. Going from a strong independent young man and sole provider for my family to my wife having to dress me in a matter of weeks of my first RA flare was difficulat and confusing. Unfortunately, depression and multiple back surgeries have made the road very difficult and sometimes the feeling of any sense of normalcy will be difficult for me to ever achieve again. My wife and two children have been my greatest support system and psychologists over these years. Before my diagnosis, I was building our home. Then, when I got ill, my closest friends stepped up and finished our dream for us. They have also been there for us over the years with love and support. Name: Wendy

Age: 34

Diagnosed with Psoriatic Arthritis, Psoriasis at age 33

How has your condition impacted you? This year of being ill has profoundly changed me. I am quieter, my social cirlce is smaller, my house is messier, and I find myself wearing sensible shoes. The best thing I can say about psoriasis in relation to your vanity is that it is a good "character building exercise" - one that I am just about ready to be done with. In a sense this disease has impacted everything about me from my clothing choices, to my diet, my daily chores, what career I want to have, even to how I mother my kids. Name: Kate

Location: Melbourne, Australia

Age: 23

Diagnosed with Ankylosing Spondylitis at age 22

How has your condition impacted you?  A year ago I would have given a very different answer: I was at the height of my pain levels and had been told lifelong medication was my only option, so at that time, the condition made me scared, angry and worried about what was to come. Although it’s still worrying to feel the disease progressing: it has quickly moved from inflammation in the back and knees to the jaw, hip and ribs, lately I’ve felt more positive impacts. It has made me really take control of my health and learn so much in the process. In refusing medications, I have begun to learn the huge role that diet, exercise and natural treatments play in autoimmune disease. Through trial and error, and importantly learning to listen to my body, I’ve had enormous improvements in my symptoms since making changes to my diet, eliminating gluten in particular. I’m learning to feel more confident and assertive when it comes to my own health care: learning to listen to my body first and foremost, and to be so careful of what enters it, be it food or medication. Name: Kelli
Location: Texas
Diagnosed with undifferentiated connective tissue disease at age 23.

1. How has your condition impacted you?

It has made me appreciate good days more and deal with bad days better.  I have learned that it's ok to slow down and just rest.  I have learned to be more flexible with life and unexpected events.  I have learned to appreciate the simple things in life because some days I can't do everything I want to.  I have had to slow down quite a bit, which is difficult to do in my 20's.  But in the end, I think it has made me mature faster.  It's like those elderly people sitting in their rockers, telling you all their wisdom; because they can't do everything they used to and realize what's important and valuable in life.  It's kind of like that, except I am experiencing it in my 20's. Name: Katie
Location: San Francisco, CA
Age 31
Diagnosed with Crohn’s Disease at age 24 (after nearly 2 years of struggling)
Diagnosed with Wegener’s Disease at age 29

How have your conditions impacted you?  I’ve always maintained this life rule that you never know what anyone is going through — even if you know them extremely well. Becoming ill made me realize just how true this was. I went from being a scholarship athlete to being too weak and ill to get out of bed some mornings. With silent illnesses like Crohn’s and Wegener’s, no one realizes just how sick you truly are until you end up in the hospital. To boot, with the frequent weight loss both diseases enable, I’ve had people tell me “You look amazing!” when I was feeling awful. That’s just strange (and kind of hilarious) to me.

My conditions have also taught me the value of being hyper-aware of how I treat my body — and subsequently have made me very resentful of people who don’t treat theirs with respect (unfair, I know, but true nevertheless). I was vehemently anti-smoking before open lung surgery, but after — my feelings about the absurdity of smoking cigarettes are...ineffable. No one wants tubes in their lungs — no one. I can’t say that enough. I don’t want to dictate anyone’s life choices, but I also don’t want anyone to enable unnecessary damage and pain to themselves -- especially those I know and love.

What would you like for other people to know about your conditions?  You can and will be an extraordinary person even with these kinds of afflictions if you truly want to be. Everyone is going through something, even if you aren’t aware of it -- mine just happens to be bad health.

Also, share the knowledge you gain through your experience! You can help those around you who may be going through something similar in ways you can’t imagine. I feel very lucky to be at ease with a dialogue about Crohn’s and Wegener’s — it helps me to navigate toward a healthier life and possibly a cure for both some day (fingers crossed).

What would you like to tell  someone who is recently diagnosed with your condition(s)?  Everyone will try and give you their version of how to “cure” your ailment — but the honest to goodness truth is, we are all different. People will constantly say “You can eat that?” or “You can do that?” -- you have to know that they likely only have your best interest at heart (no matter how annoying it gets!).  I get deathly ill if I eat peanuts, but I have lots of friends with Crohn’s disease who can eat peanuts until the cows come home.

Tell those you love when you’re not feeling well -- it enables them to give you the support you need. (I still struggle with this though — because I don’t want people to label me as “sick.”)

Katie's favorite quotes:
“Our lives begin to end the day we remain silent about things that matter.” —Martin Luther King Jr.
“Be kind whenever possible. It is always possible.” —Dalai Lama

Thank you so much Katie!
Also, please be sure to visit Katie's blog, Chronic Style. Name: Joseph
Location: New York, NY/Mumbai, India by way of San Diego, CA and Dallas, TX
Age: 25
Diagnosed with Juvenile Rheumatoid Arthritis at age 8

How has your condition impacted you?  RA and Heart Disease have impacted my life tremendously. At a very young age, I had to learn to deal and live with my conditions. This made my childhood very difficult. I was unable to grow up the normal way healthy kids do. I would dream of being as strong as my athletic twin brother and living a disease-free life. I found yoga and decided to follow my dreams of a disease free lifestyle. Since then, my life has changed and any pain I feel in my body only fuels my desire to transcend the limitations within myself - mentally, physically, and emotionally.

What would you like for other people to know about your condition?  I was diagnosed with JRA when I was 8. I had many complications from the physical stress and from taking all the medications. Between the age of 11 and 13, I had major knee surgery, suffered from migraine headaches and had stomach ulcers. At the age of 13, I had a heart attack. I found yoga when I was 19 and have been been in remission for the past 6 years of my life.

What would you like to tell someone who was recently diagnosed with your condition?  Not to settle for the cards you have been dealt.  If you do not learn to have joy in life and accept your condition(s), then you might as well live in a box. We are given our condition to learn from it and to become stronger and wiser about the way we live our lives. All conditions can be controlled, if not reversed, through our own minds. It's our willingness to change and not live under the shadow of our disease that gives us joy in life.

Here is the first quote that popped into my head after I wrote this. It's from my teacher, Bikram Choudhury - "Having doesn't mean anything if you don't know how to use it."
I like this quote because it reminds that my conditions were a gift. A gift which taught me that anything in great life is worth suffering for. :)

Thank you so much Joseph!  Your smile and positive attitude are contagious!!
Be sure to check out more of Joseph's amazing success with Bikram Yoga here. Name: Jennifer
Location: New York
Age: 38
Diagnosed with Hashimoto's Thyroiditis at age 33, Sjogren's Syndrome with a small fiber peripheral neuropathy at 35, Systemic Lupus Erythematosus at 38

How have your conditions impacted you?  My illness has completely changed the course of my life.  Because of arthritis and my peripheral neuropathy, I was unable to continue my job, just 1 year after I had finished a lifetime of training for that career.  I started my own business that gave me a flexible schedule to attend doctor appointments and rest as needed.  After a year, I went back to work part-time, while keeping my own business running.  Juggling the two is difficult, but I am definitely quite happy with my career at this point in my life.

The most difficult part of my illness is the effect that it has on my family.  My thyroiditis was undiagnosed during my pregnancy with my son and we nearly lost him at 19 weeks of pregnancy.  Fortunately, after many months of bed rest, he was fine.  But I developed one autoimmune disease after another in the years that followed.  My son has never known me to be well.  He is a very active boy and I HATE that I cannot keep up with him.  My husband is a wonderful single parent when I am out of commission.  I am grateful for that, but desperately wish that I could always be there when they need me.
What would you like for other people to know about your conditions?  When you develop one autoimmune disease, you are more likely to develop another in the future.  I feel like the poster child for this statement!  I would like people to keep this in mind if they are ever diagnosed with an autoimmune disease.  Not all doctors are astute enough to make the connection if you become ill in the future that this may be another autoimmune disease.
What would you tell someone who is newly diagnosed with your condition(s)?  You are your best advocate.  If your physician is not answering your questions or spending enough time to listen to you, start looking for someone else and do not feel guilty about it.  My biggest mistakes in managing my health have been to trust doctors who were really not dedicated to my care.  These mistakes were serious ones that negatively affected my health for several years and almost caused us to lose our son.
It is also really important for you to figure out what your insurance will and will not cover.  I have had 4 different health insurance plans since my diagnosis.  Our previous HMO and PPO plans seemed fine until they did not cover necessary procedures and medications.  We spent thousands more than the maximum out-of-pocket amounts because of the expenditures they did not cover.  Ultimately, a high deductible plan that covers everything once the out-of-pocket amount has been met has been the best value for our family.  I know exactly how much to budget for my health insurance each year, and that has been a huge relief.  Being sick and paying for health insurance is hard enough.  Fighting for coverage is a battle patients should not have to wage.
Thanks so much Jennifer! Name: Ali
Location: New York, NY
Age: 26
Diagnosed with Ankylosing Spondylitis at age 18

How has your condition impacted you?  I would like to say not at all, but as time goes by, I'm realizing that that might be a bit more of a lie than I've let myself believe. Being diagnosed at a younger age, and having misdiagnosis after misdiagnosis since I was thirteen, AS became a part of me that I simply dealt with; it was, and continues to be, a part of my everyday life. In a way I'm glad that there was a four year period of trying different medications, having allergic reactions to other medications, and dealing with seemingly endless questions from middle school and early high school friends. In retrospect, this helped me appreciate a concrete diagnosis that much more. It built character, I wrote my college essay on the challenges I faced, and it helped solidify a strong appreciation for the little things in life. Learning to approach any situation by looking for a silver lining, no matter what has occured, has helped put a lot of things into perspective.
What would you like for other people to know about your condition?  It's okay to ask questions, and I'd actually prefer it if you did. Going back to the diagnosis phase, things get a little hazy, but that entire period is so crucial to really understanding AS, that it might take a question or two to show me that you care to know and will try to understand - it's a common misconception that arthritis is only something that your grandparents can get. Please understand that I might look perfectly fine, but I might be incredibly fatigued. Or achy - especially when it's rainy out. However, I also hate to complain, so offering to carry something up the stairs, offering me a couch instead of the floor if I'm staying over your house, or hanging back with me when I walk just a bit slower after leaving the movies, is appreciated more than you know.
What would you like to tell someone who was recently diagnosed with your condition? First and foremost, yay! You're not in the dark anymore, and that's half the battle. Secondly, don't get discouraged. Although it might be hard to not beat yourself up over the ups and downs (it took going through an entire category of medications, endless rounds of physical therapy, multiple casts, different specialists, and finding a drug that wasn't even FDA approved back in 2003, for me to find something that gave me relief and stopped the progression of things), do the best that you can do, and give yourself a break. After you have a chance to process, well - everything - decide how you're going to treat this new aspect to your life. You don't have to suffer alone, and it's okay to ask for help. It also doesn't have to be a constant demon, as you'll get to know your body and yourself in a much deeper way than most people. Take advantage of this, as it will help you appreciate similar qualities in others - although you might not want to share things at first. I'm still coming to terms with openly talking about everything, but I'm also learning that that's okay. You'll come to notice who really sticks around, and who offers to carry that extra heavy bag. Or maybe, someday you'll be able to carry that heavy bag yourself, and these little things are the things that matter. :)
Thank you so much Ali! Name: Lori
Location: Ronkonkoma, NY
Age: 44
Diagnosed with Rheumatoid Arthritis in 2001.  Also suffers from Fibromyalgia.
How has your condition impacted you?  Professionally, it has taken away the ability to work full-time which has resulted in my giving up a fairly well-paying job for part-time work.  Because I am limited in energy, focus and physical ability it has led me to spend my time on the things that matter to my heart. Where I once worked in “Corporate America”, I now work at Non-Profit Agencies. Working with my church’s Food Pantry and The Foundation for Sight and Sound has allowed me to use my professional talents for people who need it the most. Also, it’s NOT 9-5, so I can work as my health permits.

Personally, it has highlighted how amazing my family is. When I let go of control of how everything gets done and allow my son, daughter or husband to help in their own way, they can be part of the solution. When my son was only 12, he helped give me injections.  My daughter travels with me and helps me with all the crazy plans I make.  My husband does dishes and shopping and ANYTHING he can think of. Empowering them makes us all feel better.
Finally, this condition does not fit my personality. It is painful and I am not one to wallow or “give in” when my body wants to stop. I am still not sure how to deal with it all. It is a continual lesson in acceptance and it has made me look at how hard I am on myself. No one expects as much from me as I do.
The impact on my life is a moving target but so far, I’m still taking shots!
What would you want people to know about your condition? Apparently, not much - It has taken me years to talk about what goes on in my body and when it does come out I am overwhelmed with worry about letting people down.  Having said that - I want other people dealing with RA and/or fibromyalgia to know they can talk to me about what they are going through. Some of the greatest healing can come from sharing.
What would you want to tell someone who is newly diagnosed with your condition? Try and be kind to yourself. There is only so much you can do to feel normal. Keep changing doctors until you find someone who shares your vision for your future health. Whenever I am faced with a new barrier – a new joint inflamed, an existing treatment stops working, a new surgery becomes necessary – I fight with all my strength to get back to “normal”, but if the fight falls short of the mark, I’ve learned that by accepting the situation a new possibility will open up. The thoughts in my stubborn brain will change and answers will present themselves in ways that I could not have been imagined.
Lori's favorite quote:  "Do what you can, with what you have, where you are." -- Theodore Roosevelt
Thank you so much Lori! Name: Betsy
Location: Rochester, MN
Diagnosed with Ankylosing Spondylitis at age 31
How has your condition impacted you?  It's still hard for me to take in that Spondylitis is something I have, and am going to have to deal with going forward. I was in denial for quite some time. I hoped that I was just misdiagnosed again. It has only been recently that I have come to a point of acceptance and understanding to tell people outside of my intimate circle of friends and family. I am learning who my true friends are and that not every one can handle my new reality. I am learning that I have to create balance in my life and carefully choose how I spend my energy. I am constantly working to reframe my grief for the things I cannot do, but instead look for new ways to find joy. My condition really has impacted how I view and prioritize my life, more than the obvious physical obstacles. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am stiff in the morning and quite fatigued, which is difficult as a mother of 2 young boys.

What would you like for other people to know about your condition?  First, if you have not heard of this disease check out the following website to learn the basics: www.stopas.org. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis, which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow progression or even bring a cure.

What would you tell someone who is newly diagnosed with your condition?  There is hope. There are many approaches to treating this disease.  I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with.

I am a mother of 2 young boys and was unable to accept the textbook answers I was getting from the first rheumatologist I saw. I was uncomfortable with a symptoms based approach. So I did my research, looked at clinical trials, read endless scientific journal articles, and found a rheumatologist who had the approach I desired, to treat the disease systemically and try to slow or halt progression. There are endless treatment and lifestyle choices to explore.

When I shared my diagnosis with my aunt, she sent me a beautiful note. I hope this excerpt helps you as it has aided me in staying grounded on even the most painful days, “I believe that God gives us life with a purpose attached. And that purpose, whatever it may be for each of us, still remains no matter the circumstances. And sometimes difficult circumstances can even bring our purpose into sharper focus.”

Thank you so much Betsy!!
(And thanks to Maya for introducing us!) New York City
Age 21

How has your condition impacted you?  My condition has been a challenge since the day I woke up with stiffness, pain and swelling in my feet.
As the days were passing by, I was frequently going to the ER as it was affecting different joints of my body and I had no explanation why I was going through so much pain. I felt tied down, but with pain, and I couldn't do anything . . . just wait. The pain was so intense that there were no words to describe it.  My family was very understanding, they never left my side.  After 5 months of pain and struggling I was diagnosed with JRA.  I felt relieved, but I was in denial.  I didn't respond well to the medication after the first year, and it was devastating.  At first, nobody understood me and it was frustrating because people don't know that kids get arthritis too. There were days that I couldn't get up from bed and times that I wanted to give up.  Endless nights of crying without sleep . . . I asked God why he put me through so much pain.  Now I know because I'm strong and I can cope with any situation no matter how difficult it is.  It changed my life in positive ways.  I became stronger and a more patient person than I was before JRA.

What would you like for other people to know about JRA?  Be considerate and understanding because you have no idea what type of pain we go through. Dealing with this condition is unpredictable; there are ups and downs.  When I tell people about my condition they always tell me "Oh, but there's a cure for that," or, "You're too young to have that."  JRA is an autoimmune disease; it has no cure and it can happen to anybody. Do research so you can understand the disease.  If one day you see me crying because I am in pain, just help me.  It will show me how much you care and understand.

What would you tell someone who is newly diagnosed with RA?  Never give up and don't let this condition get the best of you. There will be days that you will feel grief, but always stay positive. At times will you become isolated and depressed.  Keep in mind there will be better days and that you will appreciate the good and bad days. What other people take for granted we don't . . . the simple things like walking, dressing yourself, getting up from bed, etc. You will become stronger, patient and appreciate the smallest things. It might sound crazy, but battling with a pain against your own will makes you special and stronger than the pain. Never lose hope and maintain strength at all times; having a family and friends that cares helps a lot.

Thank you so much Melissa! Mishawaka, IN
Diagnosed with Juvenile Rheumatoid Arthritis at age 15

How has your condition impacted you?  I was 15 to 16 years old when I found out I have Juvenile Rheumatoid Arthritis.  At first, I didn't know what to think, how to feel, or what to do.  I didn't feel "sick" so it was confusing to me.  I went to Riley Children's Hospital in Indianapolis for the pain, stiffness, and swelling I had in my left knee and in my right pointer finger.  Slowly, through the years, it started to affect me in different joints.  There were so many days I would just sit and cry.  There was nothing I could do but cry.  I felt very alone.  I lost two jobs because of my disease, I lost friends, and I lost my teen years.  Sometimes, I still wonder how I got out of bed each day.  However, now that I am responding well to medication, I spend most of my time symptom free.  It's been a long road to get me here, but I know it's not over.  I just thank my family for being here and for a husband who doesn't get it all, but tries so very hard to.  I do believe this has made me a stronger person and more compassionate towards others.

What would you like for other people to know about RA?  Just because you don't look sick or act sick every day doesn't mean that you are healthy.  I want everyone to know that.  Be compassionate towards others because you never know what they are battling.

What would you want to tell someone who is newly diagnosed with RA?  I want them to know that it's you and RA.  It's only the two of you.  It's best to just accept it.  It's hard not to think, "Why me?", but it's best to remember that things could always be much worse.  You are the only one who can make yourself feel better.  You'll be just fine . . . even on days when it doesn't feel like it.  There will be days that you struggle.  You will feel helpless at times.  You will experience a period of grief.  However, there is a world of people out there who understand the pain.  It's best to have a great doctor with great nurses.  Also, family and friends will pull you through anything.  It's best to be patient, say your prayers, and realize that you are not alone!

Extra thanks to Michelle for meeting me on a very cold day in December for this photo shoot and then patiently waiting for the July/August issue of Arthritis Today magazine to come out before seeing her portrait on this site.  Thank you Michelle! Diagnosed with Rheumatoid Arthritis at age 24

How has your condition impacted you?  Honestly, I feel that RA hasn't impacted me as much as you may think.  I am still able to do the majority of the things I love.  When I was first diagnosed, learning that I couldn't go out drinking with my friends was quite disturbing.  At 24, that was what we did on weekends!  I've since adjusted my social life and am very happy.

What would you like other people to know about Rheumatoid Arthritis?  Most people associate Rheumatoid Arthritis (RA) with osteoarthritis, stating that, "Oh, my Grandma has that!" when you mention you have RA.  I'd like for there to be greater awareness of who is affected by RA and how it differs from other forms of arthritis.

What would you want to tell someone who is recently diagnosed with RA? I'd like to tell them not to read the information they find online.  But, I know that they will.  So, if you have to look online for info, also look for unique voices and bloggers talking about life with RA.  I've found a great group of young women in NYC all living with RA who have not let the disease change their lives.  Also, remember that the medical treatments have changed greatly in recent years, so you won't necessarily end up as an old lady with crippled fingers!

A special thanks to Katherine for enduring the freezing cold weather last winter for this photo shoot and for patiently waiting for the July/August issue of Arthritis Today magazine to come out before seeing her portrait on this site.  Thanks Kat!!
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