A resource blog for young women living with Arthritis

Leave a comment

How to feel confident when people stare at you because you limp

When my arthritis is acting up, it makes me feel drained and tired. Instead of feeling like a young woman, I feel like I have lived through a war and I’ve somehow fast-forwarded into my 90s. I imagine that my hair is grey and that I look haggard. I try to hide my pain, but I still fear it’ll show on my face that I feel worn down. My knees stiffen and I hobble, hoping that no one will notice that I am limping badly. I don’t want any attention at this point. I certainly don’t want any cute guys to stare at me while I’m in such a state! If they came over I’d run (well, hobble) in the other direction because I wouldn’t want any of them to see me limping. I just want to fade into the background and I don’t want anyone to look at me.

Have any of you ever felt like this when you limp? That’s a pretty sad way for a young woman (or man, or person of any age) to feel, right? I sure think so. flowerWhen I was younger, that’s how I’d feel when my problematic ankles and knees caused me to limp and I had to walk in public. I felt self-conscious, especially because people would stare. It was tough dealing with stares as a child, but gradually I got used to it. As I grew up, my skin thickened, I became more confident in myself and I learned to not worry about what other persons thought. It’s only natural that persons will stare (though it’s still rude!) at something they’re not used to seeing. Now that I have a fused ankle, my limp comes about more often, which means my feet are getting stared at a lot. It took some time to get used to the almost-constant stares, but I’ve been working at accepting it as part of the amazing-young-people-with-arthritis situation ;). I’d like to share some Rainbow tips with you 😉 :

1. Let’s start with the superficial first. Take pride in your appearance. Okay, so you’re limping. You might have some joint damage so your hands look a bit crooked, your knees a bit swollen and your elbow can’t straighten. That does NOT mean you’ve suddenly become unattractive and are now disqualified from ever looking beautiful! You are beautiful at this moment. So dress your beautiful body in whatever you love. Get rid of the oversized pants and wear clothes that make you feel good about yourself. You’re already standing out with your limp so you might as well stop trying to fade into the background. That isn’t going to happen. Put on a little make-up or do your hair. Paint your toe nails in your favourite colour since your feet are getting all this extra attention ;). It doesn’t matter what you wear specifically. The key here is that you must feel good about how you look, no matter what physical challenges you are dealing with. There’s no need to hide your beautiful self. Let’s treat our bodies kindly, ladies.

2. You’re getting attention. Make the most of it. Sometimes when I’m limping I catch people staring at my feet. I also have a surgery scar on one of my ankles and I often find guys staring at it in surprise. I usually ignore stares, but sometimes I’ll smile at my starers. It catches them off guard. Sometimes they look surprised and sometimes they smile back. Sometimes they get embarrassed and tell me hello. A smile is an amazing way to soften a tense situation. Now, I don’t really recommend you go around smiling at strangers like you’re crazy. But once in a while you can try it and see what reactions you get. If you prefer not to smile, then at least try to enjoy the attention a little bit. Which brings me to the next point….

3. Everyone is staring at you. Including cute guys your own age. You’re a beautiful young woman. Enjoy it! Guess what, friends? Many women pay big bucks for beauty products, make-up, clothes, breast implants etc. just so they can stand out from the mass of females and get attention. Congratulations to you – all you have to do is walk and people will notice you. And some of these people are definitely going to be guys your own age. I know that sounds deathly scary when you are limping, but think about this: even if a guy is noticing your limp (or walking aid, or wheelchair, or surgery scar), he is still noticing you. Whether we want this attention or not, guys are noticing us because we stand out due to the way we walk. I want you to realize that limping doesn’t make you unattractive – it’s just means you walk differently. No decent guy is going to care that you limp. A truly decent guy is going to be concerned and will want to make sure you aren’t stressing your body. Soon after my ankle surgery, I remember heading out to the supermarket to do some shopping. I was sporting a fresh surgery scar, an amazing limp and a glamorous granny-style cane to help me steady myself as I learned how to walk again. I remember most people STARING at me, but I ignored it because I was just happy to be able to walk again. I also remember a lot of young guys staring and then smiling encouragingly at me. Although it was weird being stared at by almost every person that day, it was not a completely negative experience.

4. Love yourself with your limp. Or walking stick. Or brace. In the past I’ve written about loving ourselves and learning to accept our physical limitations with arthritis as well as the way arthritis may physically affect our bodies. Part of accepting arthritis means embracing everything about this disease  – including the fact that we may limp from time to time (or all the time),  or that we may have to use walking aids or wheelchairs. There is no shame in any of this. I’ve learned to accept that I am a woman who sometimes walks with a limp, in addition to possessing so many other qualities. Loving ourselves and growing that confidence with arthritis can take some time, but we surely deserve it for everything we endure every day. Do you agree? If we are always going to be stared at, we might as well start enjoying this attention, don’t you think? Let’s love ourselves, love the way we walk and feel comfortable. And if we feel brave enough, smile :D. It is just too much pressure to walk around feeling insecure about something which is part of us. Once we show that we are comfortable and confident, it will make others feel comfortable too and they will hopefully be able to see beyond the limp.

Further reading:

Readers, how do you deal with stares from strangers due to your limp, walking aid etc.? Please share your suggestions, questions or experiences so we can all learn together. Thank you!

Hope you’re all well,
❤ Ms. Rainbow

[Image by pixabay.com]


Leave a comment

#RABlogWeek – Day 5 – Exercise and RA

In honour of #RABlogWeek, I am re-posting a previously written article. Today’s prompt asks bloggers to write about their experiences with RA and Exercise. Please share your experiences in the comments so that we can all learn together. Thank you!


Once you’re diagnosed with Juvenile Rheumatoid Arthritis or Rheumatoid Arthritis, it’s likely that you will start doing physiotherapy sessions to keep you mobile. As a child I remember how I never looked forward to physiotherapy time. It was such a painful process! My joints were swollen and stiff and the last thing I wanted to do was move them. As an adult, I finally understand how important it is to exercise when we have Rheumatoid Arthritis. Since our joints are experiencing inflammation, we need to strengthen our muscles and bones so that they can help us out when our joints aren’t doing too well. Exercise is also important to reduce deformity and fusion in joints. Exercising when you’re flaring sure isn’t easy, so on those tough days I just do what I can. If I muster up the motivation to drag myself to the pool on these days, I have found find that swimming helps my joints to loosen up.

Each of us has been affected by (J)RA differently, so it would be best to go to a physiotherapist and ask for assistance in developing an exercise routine which will be tailored to our specific body. If our joints are damaged, certain exercises may be too stressful for them (and can cause further damage!). However, I have included some links to exercises you can try at the bottom of this post if you need some inspiration. If you are going to attempt classes, inform your instructor about your (J)RA and do what you can manage.

Now, apparently we’re supposed to be doing our exercises on a daily basis :shock:. But as you all know, when you have a lifetime of JRA, taking an hour or two to do physiotherapy doesn’t always happen every day. Not when young ladies have exams to study for, jobs to do, dates to go on or meals to cook (oh, and RA to manage too)! But we must at least try, right? The more we incorporate movement into our routines, the better for us.

Here are some ideas to keep mobile:

1. Exercise while watching television or listening to music. Try to do the exercises you have learned at physiotherapy while you’re watching your favourite television shows. Instead of lying on the couch, lie on the floor and do some stretches so you don’t get too stiff staying in one position.

2. Use your travel time! If you commute using the bus or subway (or have to take a 6-hour flight), use the time to do some wrist and finger exercises. Stretch from time to time to reduce stiffness.

pool3. Swimming and water exercises. Try to swim at the local pool when you get a free evening. If you’re in school, then make use of the pool there. Hey, you might meet some nice guys and girls while you’re there, which will probably motivate you to keep going. I have to say that swimming helps my stiffness a lot and is my favourite physical activity to do. Also, we don’t put a lot of pressure on our joints when we swim, so for me it’s less painful than doing regular floor exercises. In this article from HealthCentral.com, Christine Miller explores the benefits of swimming and doing water exercises with Rheumatoid Arthritis.

4. Have fun at the beach. If you’re near a beach, turn it into a family outing and get some exercise at the same time. Try doing sports (frisbee, running, football, cricket, volleyball etc.) or take a dip in the water to help loosen your joints. If you’re feeling low-energy that day, try sitting on the sand and building sand castles with your friends and loved ones – it’s a great way to get those wrists and finger joints moving.

5. Rub-a-dub-dub…exercise in the tub. Fill up the bathtub with warm water and do your exercises in there. Add bubble bath to make it more exciting and fun.

6. Dance like nobody’s watching! Turn on the music and do some dancing in the living room with your friends or family…or dog! 😉dance

7.  Work out with the kiddies. If you have kids, do the moves to the Hokey Pokey, If you’re happy and you know it and Head and shoulders with them. Even if you don’t have kids, you can still try this one – just be careful who sees you. 😉

8. Go out and dance! Dress up and go out dancing with your friends. There is no pressure here: you get to move at your own pace, have some fun with your friends and get some exercise – what’s better than that?

9. Boy-band dance moves, RA style. If you’re in my age-group then I have no doubt that you have already tried dancing to the Backstreet Boys’ Everybody music video or *NSYNC’s Bye Bye Bye ;). So turn up the music with your friends and show off those choreographed dance moves. 😉

10. Aerobics classes. I really enjoy doing aerobics and find it to be a good way to keep my body mobile. If you cannot do every single move, just do what you can.

11. Take a dance class. When I was younger I did modern dancing and it really helped me because there was a lot of stretching involved. But there are so many types of dance to choose from: ballroom, hip-hop, bhangra, jazz, latin etc. Take your pick!

12. Yoga. Yoga and stretching can be very beneficial for our stiff bodies, although I admit I cannot do every yoga position! Check out this WebMD video which shows some yoga poses you can try with Rheumatoid Arthritis.

13. Zumba classes. Zumba seems to be a huge craze right now. In college I tried Zumba classes and absolutely loved them! You’re pretty much dancing while exercising. It can be a bit intense, so be careful if your joints are very damaged. Do what you can and move at a pace that suits you.

14. Take a walk around your neighbourhood. If all these classes seem too high-energy for you, then a leisurely walk to your park may be just the thing you need to clear your head after a busy day.

15. Learn the dance moves from the Gangnam Style video. Talk about an intense work out!

If you have (J)RA, then I know you have had a few hundred people lecture you on doing exercises by now. But you know what? I’ve found that it genuinely helps me feel better to keep my body active. I know that on some days just walking is a huge task, so do whatever you can. I always think a little exercise a day is better than none at all. Move at your own pace – you know your body best. I’ve included some links to suggested RA exercises below in case you are feeling extra ambitious today. 😉

-Hand Exercises for Rheumatoid Arthritis
-Joint-friendly fitness routines (picture slide show)
-Rheumatoid Arthritis and exercise

Readers, what is your favourite way to keep mobile with Rheumatoid Arthritis?  Feel free to share your ideas in the comments so we can all learn together.

Happy exercising!

Ms. Rainbow

[Images by pixabay.com]

Leave a comment

Infusion tips

[Disclaimer: Today’s discussion points come from my personal experiences as a patient. Always seek medical advice from your doctor.]

Hi everyone! Many of you may be aware that certain biologic medications are administered via intravenous infusion to treat autoimmune arthritis. Perhaps you are at a point where you and your doctor are considering some of these medications. Today I’m going to discuss some tips to make infusions a little more comfortable and a little less scary ;).

Before I started getting medication administered via infusions, the notion of getting my medication through an IV every month really did not appeal to me. But once I got accustomed to the process, I realized there was really nothing to worry about. I actually started to look forward to my infusion day every month, because it was the one day I had a chance to simply relax and catch up on my reading for a few hours! If you are going to start infusions soon, there is no need to worry. I’ve put together some tips which will hopefully make the process a bit more comfortable:

1. Dress comfortably
Since you’re probably going to be lying on a bed or sitting on a chair for a few hours, you may as well dress comfortably. Personally, I like to wear a simple shirt and leggings, as they are soft and allow for easy movement.

Another reason to dress comfortably is the fact that you may have to use the bathroom during your infusion time. The steps to this glamorous dance involve dragging along the IV pole and trying to use the bathroom while trying not to disturb the tubes on your hand too much ;). The first time you use the bathroom will be challenging/hilarious and then you’ll become a pro at it, trust me ;).

2. Keep warm
Hospitals can often be cold, so make sure you come prepared with socks, a hoodie, a scarf or blanket if necessary.

3. Use your time
Since you may have to stay at the hospital for a few hours, it’s a great opportunity for you to catch up on your home-work assignments or readings ;). If you prefer to keep school/work out of the mix for the day, bring along your favourite books, magazines, music or your laptop to help pass the time. For the more artistic patients, make use of the time by working on an art project or painting or drawing. There’s nothing wrong with bringing a little glitter into the infusion room ;).

4. Bring snacks and drinks
Pack a few of your favourite snacks to keep you from getting hungry and drink fluids to stay hydrated.

5. Bring along a favourite toy
This point is aimed toward younger patients. Since infusion time can be a scary experience for younger ones, bring along a favourite toy or story-book to make them feel more comfortable.

6. Alert your doctor or nurse if you suddenly feel sick or notice anything unusual
There is potential for an individual to develop an allergic reaction to biologic medications. Therefore, make sure that you let your doctor or nurse know if you suddenly feel light-headed or notice any itching or rashes.

For all those who undergo infusions, feel free to leave your own tips for others so that we can all learn together. Thank you!

I also found some great articles which I’ve shared below:

All the best,

Ms. Rainbow

Leave a comment

Farewell to the Red Band Society

[Red Band Society Spoiler Alert! You have been warned! ;)]

Hi everyone! I meant to write this post a while ago, but have only just gotten the time to do it. Anyway, I didn’t want to let this series fade away without writing my thoughts on it. For those of you who are visiting this site for the first time, it’s important to note that I have been living with Juvenile Rheumatoid Arthritis for the past 23 years.

For those who may not be familiar with the show, Red Band Society is about a group of young persons with various medical conditions who all live together in a hospital setting. You can view full episodes of the series on Fox’s website here. I was surprised at how much hate Red Band Society received due to the fact that I absolutely loved this series, which was short-lived and ended in February 2015. I am not a huge TV person but Red Band Society was one show I did not miss. I think I may have cried during every single episode of this series. There were so many moments with these young characters where I found myself nodding and relating to their fears, concerns and joys too. Many persons have pointed out the flaws of this show, where doctors are hot, rooms are humongous, patients have perfect hair, Ivs are mostly absent and no one is puking. Yes, a lot of details weren’t realistic in this show, but I appreciate the fact that the creators of this show were brave enough to try something new and showcase a slice of life which is often hidden in our society. A slice of life which happens for many behind closed doors and is often not discussed in real life.

In my entire life, I’ve never related to characters on television as much as I related to the characters of the Red Band Society. From the early episodes where Jordi took one last run before heading off to surgery to amputate his leg, to watching Leo learn to walk with his prosthetic leg, to Leo’s fears about being intimate with a prosthetic leg, I was able to relate to the fears and joys which each character was feeling.

There is something extremely special about growing up with illness and finding your way in this world while dealing with illness. Many persons believe that illness is a stain on one’s life and a bleak and unhappy situation. But Red Band Society was able to show that for many youths, chronic illness is just a normal part of life. Getting diagnosed at a young age means that I didn’t have many years of perfect health. As a result, everything I’ve experienced and accomplished thus far has been with arthritis. And for me, having arthritis is completely normal and not something I actively think about.

The ending of Red Band Society showed that the futures of many of our characters were on track but still unknown – which is pretty accurate when you deal with chronic illness. Also, for many who have grown up in the hospital setting, the hospital represents a “safe” place where we can get help and be ourselves with illness. But in real life we can’t stay there forever and we have to go out into the real world with all its real world challenges. And that’s what happened with our characters – while it was amazing to have that camaraderie and support in the hospital, they also had to face up to their conditions and directly deal with their unique situations.
As the characters say in the final episode: “Some things stay perfect forever.”
“Yeah, like us. This, what we have here. I don’t care where we end up, but this is forever.”

Watching Red Band Society definitely made me feel more empowered as a young person with an illness. I don’t interact with many persons with illness in my real life, so Red Band Society was a breath of fresh air in a television landscape which does not usually showcase chronic illness. For those of you who want to watch the series, you can stream it here.

For those of you who did view the series, what did you think of it?

❤ Ms. Rainbow

1 Comment

Happy new year!

Dear friends,

I wanted to take this moment to wish all of you a very happy new year! I hope that you had a great time celebrating and hope that 2015 brings us everything we wish for, especially illness-wise. I have been busy with work and life (and flares) and good times too. I hope all of you are plodding along also and enjoying yourselves! 🙂

I found this really wonderful graphic which I wanted to share with you guys below. In our own corners of the world, we each endure our separate struggles and it’s easy to feel alone with illness. But do remember that together we can work things out. I encourage you to read blogs and join forums for young persons, where you will find people who have gone through similar experiences. I have learned so much from reading about the experiences of others and it has helped me feel more comfortable with my arthritis. Remember too that you are wonderful exactly the way you are and that you can bring a new perspective on life wherever you go. Too often we focus on “fitting in” when we are fine just the way we are (I know this sounds cheesy, but I really mean it 😉 ). Your unique experiences are just as valid as anyone’s, so never be afraid to be yourself. I am thankful for each of you and hope that you have an AMAZING 2015! 🙂

Ms. Rainbow


Red Band Society on FOX

(Spoiler Alert! You’ve been warned! 😉 )

Hi everyone! Today I want to talk about a show that has been making quite an impression on me – FOX’s Red Band Society, which airs on Wednesdays at 9/8c. The show centres on the lives and challenges faced by a few hospitalized teens who are all dealing with various medical conditions. Now, there are quite a few aspects of the show which are pretty unrealistic (such as the fact that these kids are healthy enough to get dressed up, wear make up and drink alcohol but still require in-patient care, the fact that their rooms are amazingly huge, the hospital is amazingly beautiful, their doctor is amazingly beautiful… 😛 ) but I’ll let it slide for the sake of fiction and television and the fact that I actually do enjoy the core ideas of the show itself.

I am not sure who the target audience for this show is meant to be, but I can certainly say that I relate to the characters quite a lot – having grown up with a chronic illness myself. I may not have the same conditions as the characters in Red Band Society, but I surely relate to the fears and concerns that our young characters face.

In the latest (second) episode, I was really touched by Leo’s story and his fears of feeling alone, being the only person there who has lost his leg due to osteosarcoma. Wearing his false leg, he ends up going to a college party where he drinks and rudely tells his friend Dash that he wants to stay at the party. He ends up making out with a girl there and starts panicking when things start heating up in the bedroom. He insults the girl, she leaves and poor Leo ends up falling on the floor, struggling in pain to get back up. I may not be a teenaged guy, but boy did my heart reach out to Leo in that scene.

Living with arthritis, I could imagine Leo’s physical pain as he tried to walk in his new leg. I also understood his emotions of wanting to fit in, have a drink and just be part of the crowd – it’s so much easier than dealing with the reality which illness slaps you with, isn’t it? I also really felt for him during that make-out scene where the girl starts pulling on his pants and he starts panicking about his false leg. When it comes to young life and illness, these are honest and valid struggles which we all deal with and I’m glad that a mainstream show is highlighting stories like these. This show is an interesting combination of edginess, humour, fantasy and beautiful moments which often get me thinking.

While there are aspects of this show which clearly aren’t realistic, I think the aim of this series is to entertain and inspire and I’m all for that. I’m looking forward to seeing how it all plays out.

Have any of you guys watched “Red Band Society?” What do you think of it?

Hope you’re all keeping well,
❤ Ms. Rainbow

Leave a comment

“Instructions for a bad day” and “To this day” by Shane Koyczan

Hi everyone! How are you guys doing? Hope you are all enjoying your summers/holidays wherever you are! 🙂 I apologize for my lack of blog posts lately. Work has been keeping me very busy and I sadly don’t have a lot of energy leftover to be online as much as I’d like. I tend to update my Facebook page https://www.facebook.com/rarainbowsite more often, so feel free to ‘Like’ me on there if you wish. 😉

Today I want to share a couple spoken word poems by the very talented Shane Koyczan. I first heard Shane’s poem Instructions for a bad day after the wonderful Elizabeth of The Girl With Arthritis posted it on her page…co-incidentally when I was flaring and having a bad arthritis day. As someone who loves reading and writing, I absolutely loved Shane’s poem. If I had my way, I’d make every person on earth listen to it ;). As someone whose been living with autoimmune arthritis for most of her life, this poem was especially meaningful to me. And that’s why I want to share it with you guys too. When you live with illness, there are bound to be bad days (and nights 😦 ). In the past I wrote this message specifically for persons who are new to their diagnosis of illness. I’d like to share this beautiful poem, which holds so much truth and can be very applicable to our situations. I’ve included some of my favourite lines of the poem at the end of this post.

I’ve also included another beautiful spoken word piece by Shane Koyczan titled To This Day. This one focuses on bullying and rising above it and is absolutely worth hearing. I actually feel that this should be played in schools, if it’s not being played already.

“There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape….. Despite your instinct to say “it’s alright, I’m okay” – be honest. Say how you feel without fear or guilt, without remorse or complexity… If you think for one second no one knows what you’ve been going through; be accepting of the fact that you are wrong, that the long drawn and heavy breaths of despair have at times been felt by everyone – that pain is part of the human condition and that alone makes you a legion….So be a mirror reflecting yourself back, and remembering the times when you thought all of this was too hard and you’d never make it through. Remember the times you could have pressed quit – but you hit continue….Be the weed growing through the cracks in the cement, beautiful – because it doesn’t know it’s not supposed to grow there….If you are having a good day, be considerate. A simple smile could be the first-aid kit that someone has been looking for. If you believe with absolute honesty that you are doing everything you can – do more. There will be bad days, Times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not, check your blind spot. See that love is still there, be patient. Every nightmare has a beginning, but every bad day has an end. Ignore what others have called you. I am calling you friend…. Everyone knows pain. We are not meant to carry it forever. We were never meant to hold it so closely, so be certain in the belief that what pain belongs to now will belong soon to then. That when someone asks you how was your day, realize that for some of us – it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now – let go.”
“Instructions For A Bad Day,” written by Shane Koyczan.

I hope you guys enjoy these poems as much as I do. Feel free to leave a comment about them. Thanks guys!
Enjoy your summer!
❤ Ms. Rainbow


“Becoming ill” | The Girl With Arthritis

Hi everyone! I recently asked the amazing Elizabeth from The Girl With Arthritis about her story of transitioning into a child living with chronic illness and how she dealt with it, especially since she started having pains from a very early age. I wrote a bit about my own story in the past here but will eventually do another post with more details. I am always curious to learn how our arthritis stories differ and also compare, especially for young persons who have basically grown up with arthritis. Elizabeth wrote a very insightful piece which I want to share with you guys today. I was able to relate a lot to what she wrote and I’m sure many of you will also. What struck me is when she wrote “I knew at age ten that tendonitis wasn’t what was going on.” As a child I also remember knowing instinctively that what I was experiencing was not a flu or sprain like the doctor said it was. Thanks for sharing Elizabeth! 🙂

Read Elizabeth’s post here: http://arthritisgirl.blogspot.com/2014/06/becoming-ill.html

All the best!
❤ Ms. Rainbow


“The Fault In Our Stars” movie (spoiler alert!)

Hi everyone! I recently saw The Fault In Our Stars movie and wanted to share some thoughts on it. I am a huge fan of the book by John Green (which I wrote about here) and so I was really looking forward to this movie. And I loved it! Though they had to make some changes in the movie and omit some parts, overall the movie held on to the honesty of the book, which is really what makes the story so special.

We all know it’s a romance and we all know it’s about cancer – but the story is more realistic and deep than the typical romantic-comedy (or illness film, for that matter). Our protagonists Hazel and Gus explore so many different questions and concepts when it comes to being chronically ill, such as “oblivion” and making a mark on the world and who will remember us when we pass on. Also, although the characters all have cancer, the story does not focus on cancer itself. This is not one of those stories where the character triumphs against all odds and everyone lives happily ever after. Instead, it’s about teens who have cancer and how they spend their lives – definitely more realistic than what we’ve ever seen in the mainstream media. And though there may not be the typical “happily ever after” that we’re accustomed to seeing, there is definitely a lot of joy which they find in their lives, even with cancer.

Having had autoimmune arthritis for most of my life, I related a lot to Hazel and the other young characters faced with illness. From the very first lines of the movie, I knew exactly what Hazel meant when she says, “I believe we have a choice in this world about how to tell sad stories. On the one hand, you can sugarcoat it. When nothing is too messed up that can’t be fixed by a Peter Gabriel song. I like that version as much as the next girl does. It’s just not the truth.”

When it comes to illness, I’ve realized that it is very difficult for persons (especially healthy persons) to be exposed to the reality of a life of illness. The world loves winners and we love to hear stories about persons overcoming their illnesses and going into remission, about persons with prosthetic limbs becoming amazing athletes and about persons triumphing in tough situations. I won’t lie, I love those stories too (and you know I share them on this site all the time). They absolutely inspire me and give me energy and motivation to keep pushing ahead. But illness is definitely not a glamorous situation, and persons who excel have to work hard (and experience a lot of mental pain as well as physical pain) to get where they’re going. In short, it’s not easy.

One of the most thought-provoking lines of the film uttered by Augustus Waters is, “That’s the thing about pain. It demands to be felt.” I have to agree when it comes to emotional pain. We try to avoid pain and painful situations in our lives, but the reality is that sometimes the only way to get through a situation is to experience that pain and work though it, even if it means tears are going to be streaming down our face. Running from pain means it’s always there, just below the surface. Painting a smile on our faces and pretending that nothing is wrong doesn’t work out in the long run, does it? Sometimes, it’s only by facing that painful situation head on that we learn to really accept and deal with it – and this is what makes us stronger and smarter for the future.

I liked Hazel’s story because it showed the reality of living with chronic illness as a young person. Yes, there are a million doctor visits and needles and pain, but there are also beautiful moments of joy and “normal” life too. They still went out and had great times together, like every other person their age. Their love and bond was extremely beautiful – but not in a sappy, puke-inducing kind of way 😉 . Watching them and knowing what they were both experiencing health-wise, I felt glad that they had each other to lean on. When you are sick or going through tough times is really when you need love in your life (whether it is from significant others, family or friends).

I think that having arthritis made the movie more personal to me as I related to the pain of the characters and their thoughts, fears and frustrations. My heart went out to Gus as he broke down crying at the gas-station as he tried to buy a pack of cigarettes – and hold on to a shred of normalcy and independence in his life with the cancer. If you have a chronic illness, then you can probably relate.

All in all, this movie is definitely worth watching and quite funny at times. I am extremely happy that a mainstream movie has come along starring young people with illness. The movie is not overly sad or over-dramatic or sappy – it’s just right. I did cry throughout most of the movie, but I think it’s because I was able to relate to Hazel’s words a lot. For those of you who don’t live with illness, did you cry as much as I did? Haha, please let me know!

Whether you have an illness or not, please let me know in the comments what you thought of the film, or if you are planning to go see it. Thanks guys! 🙂

❤ Ms. Rainbow.



For newly-diagnosed patients of autoimmune arthritis

[Note: I’ve written today’s post based on my own experiences with illness. I am not a doctor nor psychologist.) If you are having a hard time adjusting to living with chronic illness, it may be helpful to go to a doctor who may be able to offer you further support. I have also included some helpful resources at the end of this post.]

Hi everyone! Today I have decided to write a post specifically for persons who are still new to their diagnosis of autoimmune arthritis. The Internet wasn’t around when I was diagnosed (wow, I’m that old! 😉 ) so it was really a different situation than one might experience today. It was really only in my teens that I started to have wide access to information on my condition through the Internet. In a way, I am glad about this because I am not sure I would have wanted to read about the reality of Rheumatoid Arthritis at age 7! Having had JRA for over twenty years now, I sometimes meet adults who are older than I am, who have just been diagnosed with Rheumatoid Arthritis. Speaking with them reminds me how scary and traumatic getting an illness can be, as they often express their fears to me about their conditions. When I was diagnosed with arthritis, I remember it being a very intense period in my life, as I was mentally unable to understand why my body was going berserk and why I was not getting better. I was almost 11 years old when my doctor suggested that my arthritis was extremely aggressive and would likely follow me for the rest of my life. Accepting the possibility of arthritis into my life FOREVER was another confusing period and one which took some time to get used to – but I eventually did. Today, at 29, though my arthritis journey is still not smooth nor stable, I feel really comfortable with my arthritis and I now have the knowledge and mental capacity to handle it and whatever happens. To be honest with you, most days I forget that I have arthritis – it has become such an automatic and natural part of my life.

Regardless of what age you are diagnosed with a chronic illness, whether you are 3 or 7 or 11 or 16 or 21 or 28 or 35 or 45 or 65 or 85, I think that it is a huge life changing event which takes some time to get used to. Unless you have somehow been blessed with the wisdom and patience of Mother Teresa, Gandhi and the Dalai Lama combined, when we get diagnosed with a chronic illness like autoimmune arthritis, it is likely going to take some time for our minds and bodies to adjust to the situation. I mean, most of us (if not all of us) never expect to get diagnosed with a life-long painful illness, right? Pre-illness, I think many of us simply assume that “other people” get illness and it’s not a world which we need to worry about.

There has been much scientific work which notes that many patients who live with chronic illness go through the same emotional stages as someone who is facing death or the death of someone else. The Kübler-Ross model outlines the five stages of grief: denial, anger, bargaining, depression and acceptance (Wikipedia). It has been stated that persons living with chronic illness may experience any or all of these stages, in any order and that the amount of time a person spends on a particular stage will differ from person to person.

Why am I discussing this model today? So that you realize that everything you may be feeling right now, those feelings of shock, anger, confusion, numbness, sadness, tiredness and denial are all totally NORMAL. In life, we are often taught to suppress our “negative” feelings (and by negative feelings I’m referring to those emotions that aren’t associated with rainbows and sunshine and pink cotton candy 😉 ). We are told that crying is a sign of weakness and that we must be stronger than those emotions. We are often told that we must learn to control our anger and not allow life situations to get us worked up or to get the best of us. We are made to feel guilty, “unstable” and “weak” if we are not able to handle a situation calmly and with a smile on our faces. While I agree that we must not allow ourselves to get too lost in negativity, I think being diagnosed with a chronic illness is a life event where you’re allowed to express your displeasure!

Personally, I think it is healthy to express all these emotions if you have been diagnosed with a chronic illness. Getting diagnosed with a chronic illness is a huge life-changing event, which will likely affect every aspect of our lives. And the unique thing about chronic illness is that even though you may become used to it, there may still be new health problems which will come up, which will again take some getting used to. In my opinion, expressing all our emotions is the only way we grow, strengthen from the inside and learn how to cope with the situation. And all those emotions eventually help us reach the stage of accepting illness into our lives. The important thing is that we do not stay stuck at a particular stage forever. We must progress from our feelings of anger and sadness eventually, if we are to ever be productive in life.

On youth message boards for arthritis, I’ve seen a question asked over and over by newly-diagnosed patients: “I’m having trouble accepting my illness. I keep crying all the time. How do I proceed to accepting my illness?”

The truth is there is no quick and easy way to accept an illness and just reading a blog post on the Internet isn’t going to automatically help you accept illness. It is a process which takes time and it is dependent on our age, our personalities and our experiences in life. For me, fully accepting JRA into my life happened gradually over the years. As I got older and started to understand the world, life and myself, I was able to understand my situation better. I started to realize that spending too much time feeling sad over arthritis was time taken away from doing activities which brought me happiness, such as travelling, learning and spending time with my amazing friends. I also realized that I could still do a lot, even with arthritis.

As I accomplished more with my arthritis, I became more confident with myself as a young woman with arthritis. I also learned how to adapt and deal with various arthritis-related situations. Time and experience has definitely made it easier for me to cope with arthritis and all the unexpected situations which continue to pop up. There are times when I still get overwhelmed and frustrated (especially when something new happens which I can’t control), but having the experience of knowing I’ve made it through all these years gives me the confidence that I can get through whatever I am faced with (even when I think I can’t).


Image source here. Photo by Nicole Lavelle.

It can take years to make sense of this situation and to fully get used to the fact that arthritis has become a life-long partner.

  • Give it time, and most importantly, try to adopt an attitude of trying, no matter what happens.
  • Be wary of spending too much time on the Internet reading about arthritis, while life goes on around you. Being informed and educated is great, but while you treat your condition, aim to strike a balance. You have to enjoy life too, not so?
  • Even though you’re in pain, still try to do activities that bring happiness into your life. Make sure you have something wonderful to look forward to every day, even if that means simply planning to sit down in your garden with a glass of your favourite ice cream for a half hour.
  • Surround yourself with caring people who love you and will uplift you.
  • Do not be afraid to try new experiences because you have an illness. Although there are instances where we will clearly need assistance or may experience physical limitations, try not to use your illness as an excuse not to try. How will we ever know whether we can do something unless we try, right?
  • Train yourself to think creatively. If you can no longer do certain things because of pain or joint damage, consider visiting an occupational therapist who may be able to suggest a tool or gadget to help your mobility.
  • Do not be afraid of having to use a wheelchair, a walker or crutches. If you limp while you walk, don’t let self-consciousness stop you from going out in public. I know that this is all easier said than done, but have confidence in yourself and be aware of how much you have to contribute in this world.
  • As scary as it all seems, make the conscious effort to keep pushing ahead. Your biggest friend in this whole situation is going to be yourself. Above all else, we have to try and we have to work hard to achieve what we truly want out of our lives. There may be loads of challenges along the way (and there will likely be negative persons as well), but we must train ourselves to remain focused on what we are doing.

There’s a song which does a good job of kicking you in your butt if you find yourself stuck and not progressing in life: Dare you to Move by Switchfoot.

ARE YOU CURRENTLY STRUGGLING WITH YOUR ARTHRITIS? There is no need to feel alone in this situation. Check out Arthritis Care’s Helpline here, where you can email or even phone in to speak to someone confidentially about whatever arthritis-related challenges you may need support with. They even have specific resources for youths here. Instead of dealing with this on your own, reach out to them.

Readers, do you have any advice for newly-diagnosed patients? Are you still struggling to accept your illness? Feel free to leave a comment below so that we can all learn and share together. Thanks!

All the best,
❤ Ms. Rainbow


Recommended reading: