Betsy

Name: Betsy
Location: Rochester, MN
Age: 32
Diagnosed with Ankylosing Spondylitis at age 31

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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!)

Melissa

Melissa
New York City
Age 21
Diagnosed with Juvenile Rheumatoid Arthritis at age 16

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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!

Michelle

Michelle
Mishawaka, IN
Diagnosed with Juvenile Rheumatoid Arthritis at age 15


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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!

Katherine

Katherine
New York City
Diagnosed with Rheumatoid Arthritis at age 24

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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!!

Arthritis Today

(click on the photo to read the article)

A big thank you to Arthritis Today magazine for profiling me and my portrait project in the July/August issue!  I am absolutely thrilled.  Welcome to all of you who are finding me through this article.  I am always on the look out for new subjects to photograph, so please e-mail me at jodimckeephotography@gmail.com if you are interested in participating!

Also, thanks to Kat and Michelle for posing for portraits last winter and waiting until now to see them online.  I will be posting their profiles over the coming weeks.  Thank you all so much for your support.  It means the world to me.

Leslie

Leslie

Ann Arbor, Michigan

Diagnosed with Lupus and Rheumatoid Arthritis at age 22

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How has your condition affected you?  My illnesses have completely changed my life.  I went from being a carefree 22 year old, relishing the promise of graduate school, to having my world completely fall apart around me.  I felt like a spectator in my own life.  But as time has gone on, things have gotten a bit easier.  Mainly, I have a lot of pain and fatigue, although lupus has a broad constellation of symptoms; nausea, dizziness, headaches - basically it makes me feel like I've been hit by a truck and am plastered against a wall.  Having these illnesses has made me have to re-evaluate my priorities.  It has made me question a lot of things about the world, but it has also forced me to learn about myself, just like the title of my blog suggests, illness has brought me closer to myself.     

 

What would you like for other people to know about your condition?  Just because I don't look sick doesn't mean I'm healthy or feel good.  I think that's a huge misconception. 

What would you like to tell someone who was recently diagnosed with your condition?  I would say that even if they can't see it now, there is hope.  I never thought I would get to a point where my life wouldn't be totally preoccupied by illness.  But learning to manage and know your limits are key.  Learn to say no.  Ask for help.  Understand that you are your best advocate when navigating the medical establishment.   

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Please take a moment to check out Leslie's great blog, Getting Closer to Myself.

Thank you Leslie!

Maya

Maya
New York City

Diagnosed with Undifferentiated Spondyloarthropathy at age 15

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How has your condition affected you?  It wasn't easy to live in pain through my childhood and my most formative years - it's not easy today and it wont be easy tomorrow. I've gone through my share of denial, grief, anger and fear and I'll go through it again. But the difference now is that I've learned to see my illness as just part of me - the person I'm proud to be. Being in chronic pain has made me search for the the small joys: the people, animals, places and things that I can still enjoy every day. It begs me to accept the ups and downs and to roll with the punches. It has also taught me to accept myself on a different level and, instead of dwelling on what I can't do now, take pride in the things I've overcome. I've called my disease a "built-in friend filter" because the ones who are left standing beside me are the ones who are meant to be there. I've also come to know myself and others in a much more intimate way.  Looking forward, Spondylitis has also helped me recognize my calling for social work and helping children, young adults, siblings, parents, and families as a whole cope with the challenges posed by chronic illness and disability. I don't know that I would have found this purpose without my disease.

What would you like for other people to know about your condition?  Living in pain every day is something that's hard to describe, but thank you for asking me to try. Sometimes I want to talk about it and sometimes I don't, but usually a simple and sincere, "How are you feeling today?" goes a long way. In fact, if you're wondering anything about my illness, it's okay to ask (it would show me you cared to know). It means so much when you come to understand the unpredictability of this disease, realizing that things can change from hour to hour and that I can't always keep plans. It means even more if you're content in skipping these plans and just being with me. It's hard to see you sad for me, so try not to feel that way. Instead, focus on the things I can still do. But really, it's the littlest things - the every day things - that can mean the most... carrying a heavy bag when you see pain in my face, walking slower than normal, or even opening that jar that I swear I loosened for you ;) 

What would you like to tell someone who was recently diagnosed with your condition?  Congratulations on having a name and reason for your pain and for taking a crucial step toward feeling better. Now make sure you have a doctor who will work aggressively to slow or stop the progression of the disease. After all, we're lucky to live in a time with medications that do just that. Don't just take his or her word for things. Actively search for alternative therapies, work with this doctor, but still be your strongest advocate. When the diagnosis settles in more, you have a choice to make: do you make this disease an enemy or just another part of your life? Try not to fear accepting  "letting the disease win" - you have enough to fight without fighting yourself. Allow yourself to feel proud of the simple fact that you're living in the face of pain. Really listen to yourself and it's likely you'll become self-aware in ways that others could only imagine. You'll also develop great empathy, recognizing pain in peoples' faces. This connects you to humanity and your fellow sufferers on a deeper level, so talk to them. You don't have to do this alone. Spondylitis will make you appreciate the "good days" that much more. It will force you to slow down and appreciate the people who will slow down with you. Most of all, try not to beat yourself up because ups and downs are the name of the game. Illness doesn't have to be the end of anything, so focus instead on all you can still do and get ready to surprise yourself with your own strength. 

  

(We met a super cute puppy during our shoot.  Hi Randolph!)

Please take a moment and check out Maya's wonderful blog, Loving with Chronic Illness.

Thank you so much Maya!!