Being diagnosed with a long-term condition can feel scary
“When I was first diagnosed with arthritis, I was both elated and shocked – at last I had a name for what I’d been experiencing. Mistakenly, I thought arthritis only affected older people,” says civil servant Donna Roberts. Now aged 49, Donna was diagnosed with psoriatic arthritis in 2002, after months of tests to find out what was causing the pain in her hands, wrists, hips and knees.
Here we share tips on how you can get the support you need, keep your well-being in check and maintain healthy relationships with your loved ones.
Pain management counsellor and mindfulness teacher Kim Patel explains how mindfulness and counselling can help us to take a step back and work through our feelings, rather than blocking them or carrying on regardless. “Research shows that when we accept where we are with a long-term condition, we have a better quality of life and our pain reduces,” she says. “Acceptance isn’t about resignation or giving up. It’s about taking hold of our condition and working with it, not against it.”
This feeling of relief at pinning down your symptoms can quickly fade into anger and fear as your thoughts turn to the future and how arthritis will affect your life. Patel explains “Our minds and bodies are connected, so any negative emotion causes us to tense up, which increases pain.”
Deciding who to tell and when is a very personal decision. Remember that you don’t have to tell everybody all at once. “Think about who really needs to know, such as your closest family and your line manager at work, to avoid becoming overwhelmed as you get used to your diagnosis,” says Counselling Directory member Simone Ayers.
Choose a time when you don’t feel rushed. It can be useful to have the conversation when you’re occupied with an activity, such as going for a walk or washing up, because it allows you both some space to think.
“Be aware that the person you’re telling may not be able to process everything at once, so letting them know where to find more information after they’ve digested the news is helpful,” says Ayers.
Over time, your feelings and emotions towards living with arthritis may change dramatically – and may even vary from day to day. Accepting that there will be good days and bad days can help make life with arthritis more bearable, and it’s important to understand what you can do and recognise your achievements.
“When I feel arthritis is hampering my life, I remember that if it had manifested as a broken limb, I’d have to take it into account,” says Roberts. “If arthritis has taught me anything, it’s patience and that all those to-do lists can be redone.”
Attending local support groups in your area can be a great outlet, as you can talk about how you’re feeling to others who may be in the same position. “There may be times when we experience grief for our ‘old body’ but talking about these feelings can help us find hope and even humour in our situation,” explains Ayers.
Ayers believes it’s important to maintain contact with those you’re closest to, even if that means swapping late-night dinner dates for lunches when you’re less tired. “Cherish simple moments like a chat over coffee or a phone call to stay connected to others,” she says. Intimate relationships can take time to settle down, because roles change, and you may need to lean on others for support. Read more about sex, relationships and arthritis.
Patel advises having weekly or even daily check-ins to chat with each other about how you’re feeling and keep the lines of communication open. She says that for friends and family who take on a caring role, it’s important to maintain intimacy, hugs, hand holding and sharing things together to avoid the relationship becoming purely functional. “It’s really important to maintain that sense of self. You aren’t your condition, you’re still you,” she explains.
For Donna, living with arthritis means she’s learned to put herself first. “Saying no to invitations can seem harsh, but there’s no point going along and feeling worse,” she says. “I still socialise, I’m still a friend, an auntie, a great-aunt and a colleague, but I make me a priority.”
We’re calling on everyone to declare themselves Versus Arthritis: either publicly on social media or privately by having a conversation with someone who has the condition to better understand what it’s like.
Taking a small action today can have a big impact. Just by sharing your name, or story, you’re showing you’re no longer accepting arthritis being invisible to those who don’t have it.