by REBECCA WYATT
My mum has been there for a lot of firsts in my life – first day of school, losing my first tooth, first bra, first pimple, first job – and at twenty-nine, I was hoping the next first I would share with her would be buying my first house, or having my first child. No, the first that we shared this week was a little different. You see, this week it was time to make a financially small, though significant purchase. My first walking stick.
We were browsing the range of sticks in the store, when the salesperson approached us. “Oh, you’re too young for those?” she said, addressing my mum. “Are you buying one for your mother for Mother’s Day?”
“No,” replied Mum, not batting an eyelid, “It’s for my 29-year old daughter.” The salesperson’s gaze shifted to me as she tried, quite unsuccessfully, to mask her horror and embarrassment. It was one of those moments where it feels as though the world is in slow motion, an uncomfortable silence where crickets chirped, pins dropped and if it were more than a moment, the ticking of the seconds on the clock above my head would’ve been like gunshots.
You see, I was diagnosed with Rheumatoid Arthritis (RA) almost eight years ago. I was a vivacious uni student who loved life, and all the adventures that came with it. It was during a uni lecture on RA that I sat with my friends, taking notes, and listening to the lecturer reel off the symptoms. Initially I took down the lecturer’s words, but after a few symptoms were mentioned – morning stiffness, joint swelling that affects both sides of the body, fatigue – I felt my heart sink. It took less than a month for me to be officially diagnosed, and start taking the cocktail of medications that were meant to minimise the damage from the auto-immune disease, while attempting to provide relief from the symptoms.
Rheumatoid Arthritis affects almost half a million Australians, with almost twice as many women affected as men. It causes chronic inflammation of the joints, but in addition can cause inflammation of the tissue around the joints, as well as in other organs in the body, including the eyes, mouth, lungs, heart, and blood vessels. The peak age group diagnosed with RA are women aged 18 to 35, which obliterates public perception that arthritis is a disease of “old people”. I have had a mix of good and bad days in the past eight years, but in recent times the disease has had the upper hand, and left me barely able to walk. It was for that reason that it came time to bite the bullet and buy my first mobility aid.
So back to the uncomfortable silence in the (now, somewhat uncomfortably) small shop. I felt the woman’s eyes cast over my body. I’m not sure she meant to, but it felt like she was both boring holes in me with a familiar mixture of curiosity and pity. Perhaps I’m not as psychologically-evolved as other RA patients, but I am incredibly self-conscious about the way my body has been ravaged by this disease and the drugs. It’s difficult not to notice the blackness of my eyes, after months of less-than-adequate sleep, which has inevitably led to bags that would not be permitted as cabin baggage on any domestic airline. I had hidden my red, sausage-esque fingers, attached to swollen and angry hands, in fingerless gloves. My knees, ballooned to three times their normal size, were hidden under tights and a below the knee-length skirt. Normally I’m a dedicated jeans girl, but a) my balloon-esque knees don’t fit in the legs of my jeans; b) my inflamed and fluid-filled hips scream whenever I try to wear anything with a non-elastic waistband; and c) my rapid weight gain from medications used in an effort to reduce the inflammation that is attacking my body has apparently increased my waist measurement by one, if not two sizes. For all intents and purposes, I looked just like any other twenty-something she would have encountered that day – though, based on her reaction, I’m guessing I was the first buying a walking stick.
I selected my stick from the rack (incredibly disappointed it didn’t jump into my hand as I extended it, a la the broomsticks in Harry Potter) – a gleaming black stick with multicoloured pattern, babbling away about how the pattern would mean that my new stick would go with everything in my wardrobe. Never mind the fact that a person who is not yet eligible for the age pension shouldn’t have to use one. With the swipe of my card, my RA transitioned seamlessly from an invisible disease to a very visible one, with the stick undoubtedly becoming the justification, explanation and validation of an illness that affects almost every aspect of my life. It may be a sign that the disease is winning, but I can assure you that the stick will be folded up and packed away as soon as I can manage without it. Until then, my pretty stick and I are going to do our best to bring sexy back to RA – one step at a time.
Rebecca is a pharmacist who moonlights as a professional patient. She does her best to break down the barriers surrounding chronic illness in young people.







Comments
50 Comments so far
Thank you everyone for your lovely messages, and sharing your stories also. Some of the comments made me both immensely proud and overwhelmingly emotional. To those of you who are bravely facing this and other chronic diseases – stand strong, keep smiling, and allow yourself to graciously accept the hands that people extend in an offer to help. To those of you who love someone with a chronic disease – thank you for your understanding and supporting us through all the pain and suffering, and for loving us when we deserve it least because that’s when we need it the most!
We’re all put on this crazy planet for a reason, and if mine is purely to endure and verbalise – I can embrace my purpose. Thank you all for reading!
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wow i have never even heard of RA? do they know where it comes from? ie- is it genetic?
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Hi Ella,
Yes, RA has a genetic component – certain genes have been linked to RA, though it is often set off by a ‘trigger’. For some people that’s an injury or trauma, illness, or just luck. I am ‘lucky’ enough to have inherited the disease from both sides of my family. The RA wikipedia entry is actually quite informative.
Your comment makes me happy – because this one little piece of writing on my part has meant that you have now heard of my disease! Today, Mamamia – tomorrow, the world!
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I was 18 when I was diagnosed with RA, now 20, and the most annoying thing to hear is “but your not old enough!”. Thankfully I’m on a good balance of medications now and my inflammation has gone way down, but the pain was so debilitating I was practically bed-ridden for a couple of months, and frustratingly no one really understood how bad it felt. Thanks for this story Rebecca, I hope you find some relief soon.
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I can completely relate to all of this post, having had arthritis since I was 21. I’m currently contemplating buying one of those elevated toilet seats like my grandma has…I’ve no idea how I can bring sexy back to that…
Wishing you good health, Rebecca, and all the others here going through the same thing. I hope you find the right ‘cocktail’ to help you get back some of those small freedoms.
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Thank you to everyone who has shared their stories, and who each day quietly fights against the prejudice of disability.
I am a rehabilitation doctor and my patients all live with various disabilities. They, and you, are a constant source of inspiration for me, and make my work worthwhile.
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Best wishes to you Rebecca and thank you for telling your story. I, too, have RA and have had times where I came very close to buying a walking stick. Instead I use my daughter’s pram as my mobility aid! I suppose when she is too big for the pram, I will have to consider other options. It’s such a hidden pain that people don’t understand. Educating the people around us is the best way to break down those barriers. Thank you!
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I used the pram too!!!
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I can totally empathise with your plight. I avoided mobility aids for as long as I could before finally ending up on crutches (skipped the walking stick!) March LAST year. I have a version of RA called Psoriatic Arthritis which is just as much fun. I had my first outbreak at age 33 at the height of my midwifery career. I am only on my 4th major one since then, but this one has been a doozy. By the time I allowed myself to be put on the nasty drugs, my hip joints were so bad they needed replacing (I am now 46 and in the past 6 months have had 2 hip replacements.) I was avoiding the drugs because we were trying to have a baby and the drugs are completely contraindicated (teratagenic). My last shift at the hospital was an evening shift March last year. I was working in an ICU, not too busy, just a nice pottering about shift. I had a couple of transfers out, so was clearing up after them and restocking. What no one realised was that the trolley I was loading up with stock and pushing around, had become my walking frame. By the time the shift ended, I couldn’t walk to the car that was parked about 3 minutes away. It took me the best part of 1/2 an hour to walk to the car and when I got home, I couldn’t get out. My husband and 19yo step son had to carry me up the steps. That was when I gave in and started the drugs.
So it isn’t just the disease, the pain, the lifestyle changes, the changes in economics that affects how you feel. You can add into that the fact that I will now never have children of my own. I have wonderful step children that I am very close to and love dearly, however, it is still a sore and teary topic for me. By the time I have been in remission for long enough ( my numbers are normal for the first time in nearly 4 years!!) and then off the drugs for the required length of time, I will be too old to even consider getting pregnant, even if I could!
My new hips are finally working reasonably well. I can now walk without crutches on level flat surfaces so long as they are also dry. I have been up my first proper flight of stairs (walking) in over a year. My other joints have subsided and the accompanying rash from psoriasis has now gone, too. I have to be careful of my hips as I have dislocated one of them twice doing simple things. I don’t yet know when I will be able to walk on a beach (heavily involved in the local surf club), ever ride our horses and I think we can assume skiing is now a thing of the past. Camping is a problem too, as I can’t get down and up from the ground yet.
However, small steps make a journey. I can walk at least without crying at every step and I am therefore off the stronger painkillers most of the time, which means that I am far less vague.
My goal is to get back to nursing/midwifery in the next 6 months. In the meantime, I teach at the local TAFE (who have been fantastic in accommodating my disability) 2 days a week and do medicals for insurance companies, both jobs of which are not effected by my need for crutches.
Just another comment regarding how people look at you because I realise I have been rabbitting on way too long: I have a temporary disabled sticker on my car (which has been renewed several times now). The abuse I have received when parking in a disabled space has been quite amazing! Complete strangers have come up to inspect my permit and demanded to see the photo ID that comes with it because I am “too young to need to park there”. The most vitriolic came from a man who not only yelled at me through the window of my car, but thumped the bonnet several times and shook his fist at me as well! (I did report that one to the police, along with his number plate, as I thought “this time it was yelling and thumping, next time the tyre lever!”)
Wow, I didn’t mean to write this much. Sorry about that!
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Sending you love Sandi. You are courageous!! I think you wrote so much because you read a piece that was beautiful and moving and with experiences you related to.
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Thanks for this, Rebecca. I have auto-immune issues myself and it can be really hard. It’s so good to read about someone else’s experiences with this kind of thing. And I’m so glad you had your mum there to bat for you.
Best of luck in forging a path for yourself and others. You’re a winner. xx
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It’s just not fair.
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Oh Rebecca, you story hit close to home for me. My son was 6 when he developed Stills Disease (Systemic onset Juvenile Rheumatoid Arthritis). At first the doctors thought he had Meningococcal Disease as every joint was swollen, he had a purple rash and his temperature spiked to nearly 40 degrees. He was undiagnosed for 3 months, no pain killers, no medicine until the diagnosis came through and steroids and pain killers were given. He had to learn how to walk again at 7 and at 10 had his heart and lungs rejected by his own body. The following years were horrendous, he spent most of ages 6-8 in hospital. I know how awful this disease is in young people and I hope that you are able to bring the awareness it deserves.
Best of luck to you and your recovery and mobility. I hope you live a full and happy life
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Oh I get this post so so sooooooooo much! I was 19 when my mum bought me my first walking stick – it is leopard print – she noticed my connective tissue disorder was making it more and more difficult/painful to walk so she surprised me with it…we laughed together…then cried together at what seemed like a really big step at the time to admit I couldn’t walk unaided anymore. Am now 26 and have multiple fun coloured walking sticks…I also had to bite the bullet at 23 and buy (rather than rent one on an as needed basis) a wheelchair…at least it is customised and purple! Getting your first mobility aides though, is a HUGE step…as mentioned, it brings a previously invisible problem to the surface so that everyone wonders ‘why’ you have it because you don’t ‘look’ disabled…
Good on you for bringing sexy back to RA – be confident and be happy and be the best you you can be
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Thankyou for your story, Rebecca. It makes me treasure and appreciate each day that I am able to do the things that are so difficult for you. My best wishes to you and your family.
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I remember reading “Jodie’s Journey” by Colin Thiele as a teenager, which opened my eyes to this disease. (If you haven’t read it, the protaganist is a teenaged girl who loves horses but can’t ride and is occasionally wheelchair bound due to Rheumatoid Arthritis. Read it if you can, but make sure you have tissues handy!)
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All these stories are so brave and inspiring but I am shocked by the negative stigma encountered… I hope attitudes change – fast. Good luck to everyone who has shared.
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Let’s not be embarrassed about ourselves just because some people who know nothing about our handicap or issue feels uncomfortable hearing about it or seeing it or whatever ….we’re not here to decorate those people ‘s world or make them comfortable …how? Hiding in our basement ? Forget “self-conscious” I say. They’re not used to it, it makes them blush and not know how to handle themselves : they’re probably self conscious too. Smile and make them smile and they’ll relax, probably ….but don’t be embarrassed because the mere view of you embarasses people , that’s not your responsibility at all!!
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I agree Clarinette. It’s not our job to make other people comfortable but at the same time most of us don’t want to make other people uncomfortable. You are right, if you can smile or laugh and make a joke then it is fine for everyone. I guess sometimes things like buying a stick are momentous and it is hard to find a smile. A simple statement “No, unfortunately it’s for me.”, and a smile and then forget about it is probably easiest.
To Rebecca, I feel for you and didn’t realise that it could get so bad. I used to teach a lovely little boy who had juvenile arthritis and I remember what a difference a cold day could make to him. Most of the time he was fine but sometimes he would need blankets etc His positive attitude and ready smile made him very popular. I wonder how things turned out for him as he would be about 33 or so now. (Craig, if you are out there, you gave me a beautiful pair of white fan tail pigeons, named after my husband and me!)
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Yes, my mum got this awful disease at 36 and it was difficult as a child seeing her in so much pain. she is now 76 and is still in pain today with it…..an amazing feat considering the pain and the years involved
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Thank you for this article. At 44 I have osteoarthritis in my feet and I’ve had to give up high heels, unless I have a future remarkable improvement. Sometimes driving makes my feet hurt and I might need to buy an automatic car in the future. I hadn’t thought that I may be using a walking stick at a young-ish age, but it may not be that bad.
Lupus runs in my family – my father had 2 hip replacement operations by his early 50s – so I know all too well about how horrible autoimmune disorders are.
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I’ve used a stick on a temporary basis twice, for a few months at a time. It took my GP to suggest that I may need one, when she saw me staggering into her office post surgery and my mum to get one, before I actually used one. Being a very independent sort, it’s hard to admit that you need help,even from something as simple as a stick.
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Thanks for sharing your story, the more difficult a story is to share the more important it is to do so. My Dad makes walking sticks, and before he did he never realised how
Important they are to people who can not be without one. He has seen people choose a stick from his collection and seen how that person has formed a special bond with their stick, not just a tool for getting from a-b but a life long companion, a special firm friendship tht will never end! Tfs. X
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Thank you for sharing your story. I agree with others above, the absolute worst part is that people don’t believe you’re sick because with auto immune diseases you often appear quite normal. My mum still doesn’t believe I have lupus, even though I have shared my blood tests, experiences and taken her with me to the rheumatologist. I’ve worked hard to put it in remission, so it appears like I was making it up all those years. It’s very hard having little to no support.
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i had a car accident 7 years ago. my spine was severely damaged, and is deteriorating. i can still walk a very small amount, enough to get around the house, but the letterbox and back destroys me.
when my walking stick (purchased with the same feelings as you when i was 39, just over 5 years ago) was not sufficient to make me mobile for more than a few metres (3 years ago), i ended up in a wheelchair. i was, perhaps oddly to anyone who has not struggled with mobility, so excited. i was independent! i could shop again!
i went to the shops, and while waiting for my teenager to get something inside a store, a woman struck up a conversation.
“is that your daughter”
proudly i said it was.
“you are so lucky to have her. i’d hate to be a burden on my family like that”.
stammering, i tried to explain the freedom my wheelchair gave me.
“oh, you are being brave but i would kill myself if i was like that”.
shocked, i wheeled over to my daughter. seeing my face, she asked what had happened. as we walked past, she made a comment about “is that the bitch mum?”. i just wanted to hide.
now i use a scooter, as i get so exhausted, and it strains my spine to use the wheelchair for too long. i teach at a uni, where i am also a researcher (they are used to me fanging up and down the hill, and round the corridors now, and if in my wheelchair, ask where my speed machine is:)) ).
but sometimes when somewhere new, when people see me use the stick to limp around to get my scooter or wheelchair out of the car (complicated ramp system), they get quite odd – i have been told i have no right to the disability sticker! i am somehow faking it!
i don’t mean to rain on your parade, just to agree people see us as different, odd, and judge disabled people as all one type, and it doesn’t work that way.
celebrate whatever you can find to help you move easier, move better, and don’t hear the other voices. it took me over a month after that woman to try the shopping experience again, and now i choose to just feel liberated.
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It probably isn’t PC of me to say this but you should be proud of your daughter’s actions that day. Not for the reason that airhead suggested but because she subtly slagged her off. This is 2012. With all of the work that has been done to try to make us a more aware, open, accepting society, there is no excuse for people to live in self-absorbed bubbles where they don’t take the recipient of their words into account. And this is coming from someone who is famously known for having major foot in mouth disease over the years.
It inspires me that you’ve chosen to take that negative experience and turn it into something that defines the way you approach those situations now. Thank you for sharing this – it’s given me a lot to think about in terms of how I can do the same in my own life. xo
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Your daughter did the right thing. That womanhad no right to make you feel ashamed like that!
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first off – yay for my beloved daughter and all five of my amazing kids, and my dad, and the gorgeous wonder bloke who i share my life with, and my amazing friends and colleagues) and thank you for responding.
and yes, it was rude. and thoughtless. and unkind.
but lets look at this another way – she looked at me, lucky with my loving daughter. and perhaps she felt she did not have that loving family to fall back on, that in my place she would only know loneliness and despair. perhaps she wasn’t thinking about me at all – she was telling me her story.
so, now, i choose to feel bad for her instead. and i probably should have said that, but wanted to make sure i addressed the whole disability is different to many people thing.
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I have 5 year old daughter who was diagnosed with Juvenile Arthritis 2 years ago. At the beginning she found it very difficult to walk and I’d often put her into the pram if we had a long way to go. You’d be surprised at the comments made by people that ‘she’s a bit big to be pushed around isn’t she?’ Was always nice to see them squirm when I told them the reason she was in the pram in the first place!!!
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I remember going to the Easter show when I was 7 or 8and my mum took the stroller (part of my JRA made me small and skinny)…I had the BEST time! I would never have been able to go if I didn’t have the stroller so stuff judgy people I say!!!!! Keep doing what works for your daughter, I am so glad my parents did what worked for me and didn’t care what others thought!!!
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thank you for this – if i have helped anyone, then i have been given great gift merely by telling my story:)
and i am proud of my daughter, and all my children, and how they have grown and coped with their mother being in constant pain. they have all been marvellous.
as for that sad lady, see my response about her. i actually feel so sorry for her now.
and as a previous foot in mouth geek, (now somewhat less often and when i am, more wheel in mouth geek), i can *blush* understand what you say;)
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OMFG!!! I can’t believe that woman said that to you! What an absolute shocker!
Good on your daughter.
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Rebecca, and all who have commented from their own experience, your attitudes give me hope for my two-year-old daughter, who will face some of these issues in her life after an attack of septic arthritis when she was 6 months old. I need exactly this type of education as the mother who will facilitate her ‘wellness’. Thank you.
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I too have arthritis – mine is ankylosing spondilitis..I was first diagnosed as juvenile rheumatoid at 18 months old…my formative years included crutches, wheelchair and walking stick! My pregnancy with my beautiful much wanted daughter included 5 months bed rest, 4 of those in hospital…then 12 months living at home with my sister as I could not pick up my baby or do many ‘normal’ parenting of a baby tasks. Arthritis is one part of who I am, it sits with wife, sister, mother, social worker…I am lucky at the moment my symptoms are controlled with diet, exercise and truckloads of medicine! I have a lovely 8 year old daughter who is super healthy!! Anyway, thanks for bringing awareness to chronic illness in young people…I have spent my life trying to explain why I have black eyes, why I need 11 hours sleep a night to function and why I need a mobility aid when I don’t have plaster!!! Chronic illness does not define us, it is one part of who we are….
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You’re inspiring!
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I am so glad you wrote this post Rebecca, thank you! I was diagnosed with RA at age 11 and am now 26. I have been through it all… the medications and the side effects they bring, bed cradles to keep blankets off sore and swollen ankles and knees, lots of elastic pants and slip on shoes, the many many tests in addition to all the stigma, fatigue… how the list goes on.
The thing I have struggled with the most is the stigma or at least the lack of understanding of the complexities of the disease. I think it is particularly difficult when you are younger and you are trying to find your identity and work out who you are. You don’t want to be associated with an old person’s disease, you want to be thought of as and be young!
I wish you all the best and fingers crossed for a cure soon
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Your story is so similar to mine, I could handle the pain, the drugs, the tests, the multiple doctors but I really struggled with been defined as a child/ teenager as that poor pretty girl with an old ladies disease!!!!
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My ex had Osgood–Schlatter disease, which meant he also had to use a walking stick. I remember taking him to buy one at the chemist.
I remember the strange looks, the way people would ask me “Why does he have a walking stick?” the inability for us to do something like go to the Easter Show.
But the most powerful thing he did was he owned that stick. We found the most stylish one we could and he made it part of his thing. I suppose that’s easier for a male, but it did help.
Thanks for your story, Rebecca, and I wish you luck in owning your stick
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i got my first walking stick when i was in primary school – i think i was about 10. my mum got me the ‘coolest’ one she could find – its handle was a bird. people often thought i was being silly or playing but there was nothing fun about that horrid thing. lukily i dont need to use it anymore.
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Maybe you can use your new acquisition to beat some of us less than helpful sales people on the head?
Horrible moment to share but wonderful it’s with your Mum! x
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My mum was diagnosed with Rheumatoid Arthritis in her early thirties. She is now in her fifties and is forced to take strong medication every day. Unfortunately this makes the risk higher for my sister and I. Thank you Rebecca for bringing awareness to such an important issue that many don’t know much about. I wish you the very best of luck in managing this terrible form of arthritis. Hopefully one day a cure will be found.
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I am sorry for your RA. One of my best friends has MS and had to do the same thing. She was so excited she found a leopard print waking stick.
At least the companies that manufacture walking sticks realize they aren’t just for old people.
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and that some oldies might also be able to accessorise a leopard print walking stick, also. ^_^
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A leopard print lover never grows old….
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Good post. It’s important for people to understand the nature of chronic diseases and the fact that they truly do affect the young. The more of us who are open about out conditions, the more people will realise we’re not lying, exaggerating or over emphasising about our pain and suffering. I wish you well on your journey Rebecca.
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I don’t just bring out my walking stick on an “as needs” basis but also on a “look out for me” basis.
Airports can be a nightmare but the walking stick brings on a rush of helpful people to put bags on conveyor belts, and to fix that rotten little strip that is supposed to mark your bag. Who invented those damn things?
And when I am in the city, it is a keep away sign. All those rushing people who gently knock you on their way through to their terribly important appointment – without realising that stability is a variable concept.
But I must admit that my favourite is when my mother and I are both together with our walking sticks. This really brings on preferential treatment. Much as we would like to take our place in the queue, long waits are just out of the question and we would hate to miss out.
I am okay on buses. I hear that standing up on a bus is very good for your inner core.
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I broke my foot and sprained the same ankle when I was in my late 20s. I had a couple of weeks off work as the physio wouldn’t let me attempt Central station (Sydney) on crutches, then I used a walking stick for a few more weeks. I wasn’t nearly so polite – I flashed the walking stick of Dad’s that I had borrowed, said I had a broken foot and could I please have a seat?
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Thankyou for your story Rebecca, and for reminding me of how lucky I am!
I was suspected of having RA when I was 19. My father has a mild case. It mostly affected my hips, to the point where I had to quit ballet and got up in the morning by sliding out of bed as I couldn’t sit up due to the stiffness and pain. I was on a multitude of drugs, including Vioxx when it first came out (hope that doesn’t come back to bite me). No one could actually come to a conclusion as to what was wrong with me, so we managed with anti-inflammatories and painkillers. I was so scared of winding up in a wheelchair.
Within a few years, I had almost returned to normal. My joints are probably not as good as the average 29yos, but most days the pain is gone. No one can explain, except that it might have been a ‘symptom’ of my (at the time) untreated endometriosis, which apparently can cause auto-immune responses and inflammation.
The visual signs of what can be regarded as an ‘old person’s disease’ are quite confronting to people when you are young. I developed an interesting swagger/limp during those years, which varied depending on the pain. I was constantly asked what I had wrong with me ‘this week’. People thought I was lying.
I wish you all the best, and while I can’t comprehend having a ‘permanent’ disease such as RA, I understand the pain and to a point, some of the stigma attached to the visual parts of this disease.
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I have spinal osteo-arthritis,also considered to be an “old persons” disease. I am only 49. I also have a walking stick that I bring out on “bad”days.
Yday was a bad day and I had to deal with our real estate agent. Her change in attitude upon seeing my walking stick was amazing. Her comment of ” you are too young to have that ” said it all
Hugs to you as you battle this insidious disease
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You are so brave Rebecca. I wish you the very best in managing RA.
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