15 Things People With Arthritis Want You To Know

    "My joints feel like lead, and I can be in such pain I can sometimes be physically sick."

    1. There's no one type of arthritis.

    2. And "aches and pains" are not the same as arthritis.

    3. Your self-esteem can take a hit.

    Francesca Blunt

    "Life changed instantly, my world was turned upside down. At 18 I’d gone from being a fit athlete, playing football and skiing, to feeling like an old woman ready for the scrapyard. My dreams were temporarily put on hold.

    "Looking back I sunk into depression. There was not a day that I wasn’t in pain. I'd got used to just staring at the ceiling, trying to think through the pain. What did I do to deserve something like this? Is this now my existence?

    "Chronic illness is a life sentence. Isolation followed quite quickly after diagnosis, my self-esteem went from 10 to 0 over night. I rarely saw my friends; I hid away grieving for the outgoing and adventurous, positive person I once was.

    "Over time I slowly dealt with days and the disease better, I’d get out more, I would push myself to make the most of the days and my life. The days where I was in less pain than normal I'd start catching up with friends and going out, but at any time the arthritis would make itself heard and I'd often return home. Over the years I’ve learnt how to cope; you’ve got to learn, otherwise the pain swallows you up.

    "Around a year ago I finally came to terms with my illness. I am no longer grieving for the person I left behind; I am in awe of the woman I have become".

    – Francesca Blunt

    4. Diagnosis can be tricky.

    Carrie Thompson

    "The journey to my diagnosis was very complicated. I was officially diagnosed at 18 years old but I had suffered with joint pain since age 7. The flare-up which led to my diagnosis started in September 2010, while I was at a specialist music boarding school, studying for my A-levels. It began with extreme tiredness and pain and stiffness in my joints for about an hour in the mornings. I put it down to the stress of school and music college applications.

    "By Christmas 2010, I was finding it a real challenge to dress myself and my mum, concerned by this, sent me to my GP, who referred me to a rheumatologist. Fast-forward to February 2011 and I was essentially paralysed from the neck down. I was unable to feed, bathe, and dress myself. I needed my parents to help me to the bathroom and I needed a wheelchair. I had a barrage of tests, testing for multiple conditions. It wasn’t until I was admitted into hospital due to how seriously ill I was that I received a diagnosis of rheumatoid arthritis.

    "I was in hospital for 10 days, and the severe inflammation in my body had caused me to have fluid on my lungs as well. I was immediately started on treatment of strong steroids, a drug called methotrexate, and strong pain relief to attempt to bring my arthritis under control. Despite how unwell I was, to receive a diagnosis was a great relief and that meant I could finally receive the treatment that I needed."

    – Carrie Thompson

    5. It's not just stairs that are a challenge.

    Catherine Manning

    "Arthritis affects every part of my life, from getting out of bed, washing, dressing, eating, getting out and about to going to bed at night.

    "Arthritis is a constant battle and a challenge to lead what is thought of as a normal life. Arthritis makes my joints stiff and painful. Just getting dressed is a chore and a painful and frustrating process most people take for granted."

    – Catherine Manning

    6. A typical day can vary.

    Monique Francois

    "A typical day would be waiting for my mum to make me breakfast. My mum then rubs my joints and muscles with oil to help them to unstiffen. My mum is my carer, so I am with her pretty much all day, every day.

    "I was 25 years old when I was diagnsoed with systemic lupus erythematosus. SLE is an auto-immune condition, where the body's immune system has been damaged. This damage means that the body's natural defences attack itself; resulting in symptoms of extreme fatigue and weakness, joint/muscle aches and pains, which can develop into rheumatoid arthritis, hair loss (which I suffered in 2011), and inflammation of the tissues covering internal organs with associated chest and/or abdominal pain. In 2012/2013, my kidneys became inflamed due to high lupus activity, and I was required to have chemotherapy in order to kill the affected cells which had been causing the inflammation."

    – Monique Francois

    "My daughter Mae is currently experiencing a flare, which is not yet controlled by her methotrexate, so she’ll get up slowly in the morning, and get ready for school and take her medicine, including an injection once a week. We scoot to school (with me helping when necessary), and then she spends the day there. She has trouble with the stairs at school, but generally has fun with her friends and makes fart jokes and acts like a normal 10-year-old, though she’ll probably take some additional painkillers at lunchtime.

    "After school she goes to activity clubs a couple of days a week, but we have to be a bit careful not to overdo things. We scoot home, and sometimes she’ll have a blood test at home, followed by lots of cuddles with the dog we got her to help her overcome her needle phobia (which worked very well). She does some mindfulness, and plays. She’ll typically read until we drag the book off of her, and then we’ll try and convince her to have a reasonably early night.

    "Mae sometimes sleeps badly during flare-ups (she didn’t sleep through the night until she was 6, when methotrexate completely alleviated her symptoms), and we’ve recently introduced her to the ‘spoons’ chronic illness concept, so whilst like all kids she’s always trying to stay up a little later, she’s interested in the concept of being able to do more if she looks after herself well."

    – Keri Webster

    7. Treatment plans differ, but they're all long-term.

    8. You have to ration your energy.

    9. It can be tough on relationships.

    10. But family and friends can make all the difference.

    Catherine Manning

    "My husband, Paul, has stepped up to be my carer and helps out with my day-to-day tasks such as getting showered and dressed. I have a small group of close friends too that know how my arthritis has affected me. Both family and friends are there for me, especially on the hard days when everything seems dark and it's all too much. They understand, help out, and cheer me up. I'm very lucky.

    "A typical day starts by waking up with stiff, painful, and swollen joints including hands, feet, knees, and hips. Paul helps me get out of bed and washed and dressed. He also makes my breakfast before getting the children ready for school and sorts out my medication for the day. I spend most days at home unless I have hospital appointments or physio, which I can have up to three appointments a week.

    "Arthritis is very isolating. Paul and the children come home from school at 3:30pm and I enjoy hearing about their day and what they have been up to. Evening routine is pretty much the same as the morning routine but in reverse."

    – Catherine Manning

    "My family have been my rock since I developed arthritis. Without their continuous assistance every day, I would not be able to function, or even begin to live a semblance of a normal life – or even have the quality of life I do at the moment.

    "I have very few friends, and those who have stayed around since I became sick are fully supportive of me and helping with my condition. My friends are always researching my condition so they can educate themselves. They offer me advice about how best to look after my body, when I don't feel like looking after myself, as I should, especially during the winter months when the weather is extremely harsh and unforgiving to those who have to cope and live with arthritis."

    – Monique Francois

    11. People can be rude and unthinking.

    Keri Webster

    "My daughter Mae suffers from stiffness in the morning, and takes a while to get going. That’s not unusual for most people, but it’s a bit different when you consider that Mae is 10 years old. This means that it takes longer for her to get ready and get to school on time. She is also in pretty much constant pain during a flare-up, which fluctuates from day to day and times within that day.

    "This is mainly a problem when people think that Mae doesn’t deserve a seat on the bus, or when other kids think that she’s just faking pain and limps to get out of PE. Invisible illnesses are hard for everyone to understand, and Mae is actually remarkably forgiving about this. The other misconceptions mainly revolve around people’s own opinions on the matter; if I had a penny for every time someone told me to take her to a homeopath or change her diet (as though we would not have done our own research on the subject), Mae would still have arthritis, but we could afford a Rolls-Royce to use as a mobility aid."

    – Keri Webster

    12. You never know what someone else is going through.

    13. It's tough on parents as well as children.

    Keri Webster

    "Mae was 2 when we finally admitted that she wasn’t just trying out a cool new walk, and was actually limping. I’d like to pretend that we didn’t take our time about that, but it’s not true. As first-time parents, we didn’t really know what was normal and what wasn’t, and we didn’t want to just compare her unfavourably to other kids.

    "When her knee swelled up and she collapsed, however, we did take her to the GP, and then the hospital. Several worrying days of tests followed, and then several frustrating months of MRIs, joint injections, and denials from the orthopaedic team (“sometimes things like this just happen, it’s not necessarily rheumatological”) before we were referred to the wonderful rheumatology team, who gave us a diagnosis (juvenile idiopathic arthritis), checked out all of her joints, and still have her under their care. Since the age of 5, Mae has been under the care of our local hospital and Great Ormond Street children’s hospital."

    – Keri Webster

    14. It's hard to plan ahead.

    15. But you learn to adapt.

    Thanks to Arthritis Research UK for their help with this piece.

    Ailbhe Malone is the campaigns editor for BuzzFeed and is based in London.

    Contact Ailbhe Malone at ailbhe.malone@buzzfeed.com.

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