It’s OK to feel low, worried, frustrated, angry or all four – arthritis can have that effect.
Here’s what else is OK:
If you feel any one of the ‘difficult’ emotions mentioned above, it doesn’t make you ungrateful or a burden. Your feelings are valid, and you deserve the space to express them and be supported.
Whatever social media may try to tell you, negative thinking will not make your arthritis worse, just as positive thinking isn’t a cure. Learning how to notice and work through your feelings can do wonders for your life, but you are not a problem that needs ‘fixing’ and neither are your emotions.
While you’re with us, let’s talk about what else is OK when it comes to how you feel…
It’s OK to talk about how you feel
Because mental health is just as important as physical health
Our generation has come a long way with mental health awareness, but it’s still often seen as less important than physical health. Sometimes even doctors can be dismissive of mental health, focusing only on the physical side of arthritis, leaving us feeling guilty for raising it or too ashamed to even broach the subject in the first place.
However, the link between the body and the mind is becoming ever more apparent, and our physical state can impact on our mental health and emotions.
Flare-ups can make it harder to do the things that make us feel better, such as going out with friends, playing sports, or even just getting a good night’s sleep. Meanwhile, poor mental health can make it harder to manage physical symptoms. This can make it feel like things are spiralling out of control.
“During flare-ups, feeling stressed out and down makes it a lot harder to motivate myself to eat the right things and do my physio exercises,” says James, 26, who has been diagnosed with rheumatoid arthritis and ankylosing spondylitis since he was 21.
Because of this, it’s more important than ever for people with chronic conditions like arthritis to prioritise our mental wellbeing – for both our body and our mind’s sakes.
It’s OK to feel – full stop
Your feelings are not less valid if you don’t have a diagnosed mental health condition
It’s very common to feel overwhelmed by difficult emotions. In fact, a study by the National Rheumatoid Arthritis Society (NRAS) found that over 93% of arthritis patients surveyed had some symptoms of depression and anxiety, despite most not meeting the criteria for a formal diagnosis.
Worry and stress tends to crop up a lot for people with arthritis. Flare-ups, fatigue and joint damage can affect our ability to get on with life, interfering with work, university or relationships.
“I find that when I’m flaring up, all my plans just fall apart, both academically and socially,” says Suruthi, 22, who is currently at university. “I struggle to make it to lectures and fall behind on work and then end up with less time to socialise because I have to catch up.”
It’s OK to take your time
Friends and family may want you to ‘cheer up’ fast, but take all the time you need
While “just stay positive!” may seem like good advice to many a well-meaning relative/friend/colleague, living with arthritis is not always rainbows and butterflies. Sometimes it’s hailstorms and huge daddy longlegs.
Accepting the ‘chronic’ bit of chronic illness is particularly tough – once diagnosed, we’re in it for life, and that’s a hard pill to swallow. You’ve probably heard of the typical ‘quarter life crisis’ that many 20-something-year-olds experience when they think about the future. Well, when you have arthritis, those fears can seem even more real, whether you’re in flare or not.
As much as we may want to – or feel that others expect us to – we can’t just wish our feelings, or our conditions, away. Learning how to process difficult emotions, whether by talking, journaling, blogging or just finding your nearest hilltop and screaming into the void, is often the only way to move through them.
Joel, aged 35, has lived with arthritis since he was 10. He uses writing as a way of getting through. “I often write about how my life is a pendulum,” he says. “There’s the sick Joel, who disappears off the face of the earth, cannot participate in sport, and lacks the confidence to socialise because I have a limp or have put on weight. But there’s also the non-flaring Joel that is sociable, active, and has 101 hobbies and interests.”
It’s OK to be vulnerable
There’s great strength in asking for help when you need it. Yes, for men too!
Arthritis doesn’t just make us more prone to poor mental health, it also makes it harder for us to do the hobbies and activities that make us feel better. Sometimes, it can even feel like we’re losing who we are, or not living up to who we’re expected to be.
This can be especially tough for male-identifying people, as our society still connects ‘manhood’ with physical ability. This can lead to feelings of shame and loss of masculine identity, which can also prevent men from speaking out about their condition and asking for help.
Joel knows exactly how this feels. “For every time I tell my wife I am in pain, there will be three or four other times I’ve sobbed in the bathroom trying to cope with it,” he says. “Some of it is pride, a lot of it is not wanting to burden others. As a man, it’s difficult to admit you are struggling or cannot do something.”
Many men don’t realise that there is immense strength in taking off the armour and asking for support. Ask yourself, if a friend was having a hard time, would you rather they kept it to themselves instead of telling you? Chances are you would want them to talk to you about it, just as the people in your life would want to support you.
It’s OK to do it your way
When you feel like the universe is shutting you out, try changing the universe
As young people, not being able to keep up physically or socially with our peers can be crushing. However, just because we can’t do something the way we used to doesn’t mean we shouldn’t do it at all.
Let’s use physical activity as an example. Staying active is extra important for people with arthritis, both from a physical and mental health perspective, but it can sometimes feel impossible to do. Watching friends head off to the latest must-do gym class, in the latest kit, looking young and fit, can be depressing.
Psychiatrist Dr Jessica Eccles recommends sacking off the impossible and finding a new possible: “There are ways to get involved in a different type of activity or adapt your participation in it. Trying to set realistic and achievable goals can be helpful.”
This kind of mindset helped James, who recently completed a 10,000 steps a day challenge to raise money for Versus Arthritis: “Rather than dwell on the fact that I can’t squat as much weight as once upon a time, I take pride in the fact that I can now work out in some capacity again, when not too long ago I couldn’t walk at all.”
When you’re in a flare-up, especially a long one, it can be hard to imagine things ever getting better again but, as James’ story shows, it’s not forever – there is always hope.
“When I was first diagnosed with arthritis five years ago, I did feel scared to play football again,” says James. “However, earlier this year I plucked up the courage to give it a go and really enjoyed it. I was so proud of my legs for getting through it, even if it was just a kick around with some friends.”
Remember, there is no such thing as a ‘little victory’. If it matters to you, then it’s worth celebrating.
It’s OK to share
Reach out when things get hard. It helps everybody
Even before the coronavirus pandemic, most people with a chronic illness knew a little something about feeling lonely or unseen.
Before Joel launched his website and started to share his experiences with chronic health problems, he spent years feeling like he had to hide his condition: “When those first few questions started coming in after the website went up, or friends reaching out with ‘I had no idea mate’, I didn’t know how to respond. For a while I was frozen with fear.”
However, once you take the plunge and decide to open up, communication can go a long way towards making life with arthritis that little bit easier.
“Having a chronic illness, although often invisible to those around you, can have a huge impact on how you think and feel and your relationships with others,” says Dr Eccles. “Talking (or writing) about it can have a really positive impact on your wellbeing. It can also help those you interact with to understand you and your needs better.”
Sadly, not everyone is able to find a space in their life where their feelings are accepted and welcomed. Ableism and stigma are still going strong in our society; if you’ve had a bad reaction to talking about your condition in the past, you are certainly not alone.
Luckily, that is why we have Arthur’s Place Social, our online community, where you can talk about your condition with people who understand what you’re going through.
“I do find it rather therapeutic when I post about my condition online because it’s a way of getting things off my chest,” says James. “I can also see from people’s responses that I am not alone in feeling these things and that there is support out there.”
It’s OK to look after you first
Taking care of yourself should be a priority – you can’t pour from an empty cup!
As young people we’re constantly under pressure to progress, perform and please, but in reality we can’t do any of those things without taking care of ourselves first – mind, body and soul.
Suruthi looks after herself by learning how to turn her frustration into self-love: “When I flare up, I get really annoyed at my body because it feels like it’s betraying me. But then I take the time to think of all the things my body does for me – for example, my legs may cause me pain, but they have literally carried me through life for 22 years!”
Meanwhile, James is using his experiences to help others: “I hope that through sharing my journey with arthritis I can help break down some of the stigma and show other young men that they shouldn’t be embarrassed, and that there are others like them in similar situations.”
Finally, Joel knows that his ability to adapt to his condition make him a role model for his son: “As my little boy grows, I hope to pass on those traits of resilience, compassion and appreciation of the good times. I want him to look at me and see somebody who, despite the pain and mental health struggles, did everything they could to forge a life that was not just ‘normal’, but fulfilled.”
Where to go for support
Arthur’s Place has put together a list of helplines and websites offering support for a variety of general and specific mental health problems, as well as some useful apps and distractions to help you manage your mental health when things feel difficult. You can find it here: https://arthursplace.co.uk/life/life-hacks/2020/04/14/mental-health-and-wellbeing-resources-to-help-you-through-the-coronavirus-crisis/
If you need support sooner, the following helplines and online support services can help you.
In a crisis
If you or someone you know is at risk of harm, call 999 or go to your nearest A&E department.
- Free, confidential helpline for those in crisis, or who just need to talk.
- 116 123
NHS urgent mental health helpline
- Advice and support for those experiencing a mental health crisis.
- Find your local helpline number here: https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline
- OR call 111
- Free, confidential support via text.
- Text: 85258
For a chat
Versus Arthritis helpline
- Free information, advice and support for people living with arthritis.
- 0800 5200 520
- Mon-Fri, 9am-8pm
CALM (Campaign Against Living Miserably)
- Confidential support tailored for men over the phone or via webchat.
- 0800 58 58 58
- 5pm-midnight, 365 days a year
7 cups of tea
- Free online support from a volunteer listener.
Side by Side
- Online mental health support community for over 18s moderated by Mind.
Togetherall/Big white wall
- Online forum for those struggling with mental health or emotional issues to get peer support, managed by clinical specialists – free for University students and staff.