15 Things People With Arthritis Want You To Know


1. There’s
no one type of arthritis.

“Arthritis isn’t just one thing” says Anisur Rahman,
professor of rheumatology at University College London. “The
term ‘arthritis’ implies having problems with the joints. So
what people generally understand as arthritis is where a
person suffers symptoms of joint pain. But there are lots of
conditions in which your joints can give you problems.

“Firstly, there’s osteoarthritis, which is wear and tear of
the joints, which tends to happen in older people. Most
people will have an older relative who will have a bit of
arthritis. That’s what people think of as arthritis. Then
there’s a whole other type of arthritis that occurs in
younger people. It’s much rarer, and it’s not wear and tear.
It’s where your immune system starts to attack your own body.
The immune system attacks the joints, making them inflamed
and causing pain.

“Rheumatoid arthritis is probably the most well-known version
of that, but there are other types as well. And there are a
number of different auto-immune disorders, all with different
names, all of which can cause inflammation in the joints.”

ID: 10071679

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

“Most people get aches and pains sometimes. Some people are
hyper-mobile, for example – they’re double jointed. Some
people get aches related to sports or poor sleep or
depression and so on. And in most cases, those are not
arthritis.

“The amount of people with rheumatoid arthritis in the UK is
about 1%. It’s a 1 in 100 type of disease. But! There are
some clues which make it more likely. One of those is
swelling of the joints. If you have hot, red swollen joints
and you’re feeling very stiff and generally unwell – and if
the symptoms vary from day to day – these are more telling
factors suggesting you could have that type of arthritis.

“And that’s when you need to go and see a doctor. With tests,
it’s usually pretty accurate to diagnose who has this type of
arthritis or not.”

– Professor Anisur Rahman

ID: 10071920

3. Your
self-esteem can take a hit.

Your self-esteem can take a hit.

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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

ID: 10041272

4.
Diagnosis can be tricky.

Diagnosis can be tricky.

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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

ID: 10041251

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

It's not just stairs that are a challenge.

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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

ID: 10041338

6. A
typical day can vary.

A typical day can vary.

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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

ID: 10041303

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

“In terms of osteoarthritis, there aren’t any drugs that will
reverse it. So the treatment plan is painkillers, things like
physiotherapy to improve muscle power, and in more extreme
cases there are joint replacements.

“In younger people – those with immune-system attacking
arthritis – there are drugs which suppress the immune system.
These are sometimes called ‘disease-modifying anti-rheumatoid
drugs’. And they are given early in the disease – this is a
new thing over the past 10/15 years – it’s been recognised
with this kind of arthritis, it’s very important to get on
top of it quickly. They stop there becoming damage to the
joints. So you’d be put on these drugs quite soon (within a
week) and it’s long-term. It’s not something that you just
take for a few weeks. But the good thing about these
treatments is that it’s possible to suppress the disease, and
give people a good quality of life.”

– Professor Anisur Rahman

ID: 10072002

8. You have
to ration your energy.

“I can wake up feeling like I have been hit by a bus. My
joints feel like lead and I can barely move, and I can be in
such pain I can sometimes be physically sick. The fatigue is
also crippling. I can wake up feeling like I haven’t slept at
all, even if I went to bed at 6pm the night before.

“On those mornings, the main priority is how to make yourself
feel well enough to get on with your day. I use heat packs
and ice packs on my joints to loosen them up. I take the
medications I take every morning, which for most arthritis
suffers can be quite a lot. Depending on how I feel after
that, I normally either have to crawl back into bed and admit
defeat, hoping that tomorrow will be better or I have enough
strength to carry on with what I planned for the day.

“Normally, by 3 or 4pm, I feel pretty tired and it takes a
lot of mental strength to make it to the end of the day when
I can get home. When I get home, sometimes I am in such pain
and I am so fatigued that I can’t even cook myself dinner.
There have been many occasions I have just gone to bed
without, too tired to do anything else. On other evenings, I
can feel adventurous and push the pain and fatigue to the
back of my mind and meet up with some friends in the evening.
Of course, I pay for it the next day! An arthritis suffer
lives for the ‘okay days’ where you have enough ability to do
all you planned, and believe me I cram those days full, as
they are few and far between!”

– Carrie Thompson

ID: 10041258

9. It can
be tough on relationships.

“Having the best support system around you plays a key role
in my life, self esteem and general happiness, I have learnt
to ditch the friends who no longer serve a purpose in my life
or misunderstood me.

“At 20 I entered my first serious relationship; I kept my
Arthritis as secret from her the first couple of months
before having the courage to drop the “arthritic bomb”. It
lasted around 3 years before we split. Although I was
supported during this time I never felt my partner understood
the disease and what I went through. After this I dated a
great friend, Sometimes the best person is right there in
front of you. She knew about my condition but treated me like
I was normal. So it was easier to become intimate, she had
seen my good days and bad and still wanted to love me
regardless, it made her very protective and fiercely loyal,
unfortunately it didn’t work out but we have remained the
best of friends.” – Francesca Blunt

ID: 10041284

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

But family and friends can make all the difference.

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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

ID: 10041340

11.
People can be rude and unthinking.

People can be rude and unthinking.

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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

ID: 10041321

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

“I get to my desk, make a cup of tea, and begin to work my
way through the numerous things I need to get done. My back
begins to ache as I’m sat at my desk, so I begin to move
around the office. It doesn’t really get much easier, and I
just don’t know where to put my body – why is it so useless?!
I’ll take some paracetamol to help me get through the next
few hours.

“As the afternoon approaches, I feel tired, and my
concentration sometimes goes off at a tangent. Of course,
this is not the same every day, but it gives you an idea of
some of the challenges I face. You, and my colleagues, are
probably not aware of any of this – they just see me turn up
in the morning and get on with my project work. Outsiders
don’t see all the small and big challenges involved in doing
everyday tasks: carrying heavy items, walking across campus
to a meeting when you’re in pain, sitting in a lecture when
you’re fighting against your own body to keep your eyes open.

“Revealing what we believe to be our weaknesses can leave us
vulnerable to criticism from others. I won’t be seen as a
gentleman for carrying that heavy suitcase down the stairs at
the station. I’ll be seen as lazy for asking to arrange a
meeting nearby my office. It’ll seem as though I’m
disrespectful and disengaged in a conversation if I feel
tired and my mind goes blank. As a society, we need to change
our attitudes, remembering that every person is living with
their own challenges. Be responsible. Be respectful. Be kind.
It’s not that difficult, but will make such a difference to
those of us living with chronic conditions, like arthritis.”

– Simon Stones

ID: 10072677

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

It's tough on parents as well as children.

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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

ID: 10041323

14. It’s
hard to plan ahead.

“Arthritis is a fluctuating condition and is very
unpredictable. One day you may feel amazing, and you often do
too much because it can often feel like you’ve been
temporarily liberated from the condition that you live with.
After doing too much, you’ll probably suffer for a few days
afterwards!

“Other days, you wake up and everything is so difficult, and
you sometimes have to accept defeat and take it easy. This is
particularly difficult when studying and working, as you have
things in your diary and suddenly your circumstances change
because of your health, prompting you to cancel meetings or
things you had planned to do. From my personal experience, I
often feel that I have let people down by doing this, and it
takes an enormous amount of effort to remind yourself that it
is sometimes beyond your control. This adds to the anxiety of
dealing with arthritis on top of your existing life.”

– Simon Stones

ID: 10041346

15. But you
learn to adapt.

“There are days where it completely takes over – usually when
I’m super busy and need to be in a million and one places.
However, I’ve lived with it for so long now that my ‘normal’
day-to-day life incorporates quirky ways of living which help
me to deal with it to the best of my abilities. To an
outsider, it may seem like it is overwhelming and takes over
your life. For some people, it really does – particularly
those individuals who have been recently diagnosed. Now,
after 20 years of arthritis, it’s the only life I’ve ever
known – so I’ve adapted and just live my life to the full!

“There’s the obvious physical limitations which arthritis has
on my day-to-day life – stiff, warm, and swollen joints,
pain, and reduced movement. I’m pretty good at hiding these,
though on some days it’s more noticeable than others.
Although, for the majority of the time, these physical
symptoms of arthritis are invisible to other people,
particularly for those who don’t use aids and adaptations to
get around. Then there’s the really invisible symptoms of
arthritis: excruciating pain, which makes me feel physically
sick; fatigue, which leaves me feeling exhausted beyond what
you could ever imagine; and the psychological impact that
arthritis has – the weight of added responsibility, the
constant need to think ‘what if’, and the anxiety that
manifests as a result.

“Whatever I do, wherever I look, I am frequently reminded of
what I live with. I give all of my energy to do things that I
want to do, but there are certain things which are just
impossible. I accept that you have to. There are so many
other people in the world living with so much more than me,
and that recognition gives me so much inspiration to get
through it all.”

– Simon Stones

ID: 10041343



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