Margaret Curran has been a volunteer on the Arthritis Ireland helpline (0818 252 846) since 2021. Living with the condition herself (for 38 years), makes volunteering her time even more challenging than usual. There are days when her energy might not be as good as others, or she may even struggle to hold the phone. But it is precisely this in-depth understanding and lived experience of having arthritis, as well as her passion for helping others, that positions Margaret so well in helping others to face the pain and challenges involved in living with arthritis. We catch up with Margaret here to discuss her experiences of volunteering and the different aspects of self-management that she finds beneficial to herself and to others.  

Margaret, can you tell us what helps you, personally, when dealing with your arthritis?

I was diagnosed at the young age of eighteen, so I have gone through many different stages of living with arthritis. First and foremost, self-management is key. You are the leader with your own condition. Yes, you are part of a team dealing with your condition, but it’s important to have it in mind that you are actually the team leader. For instance, when you come out of your consultation, which tends to be just fifteen minutes at most, you really need to take things into your own hands and be proactive in following the guidance of your consultant. Also listening to your body is key; only going to its own capabilities and limits. Aiming for balance is also important; having an active social life, whilst also making time to rest. Living well, as best you can. I’ve completed several of the Arthritis Ireland courses, such as ‘Living Well with Arthritis’ and ‘Behind the Pain’. They essentially offer a toolbox to help manage your condition and they are so beneficial for helping to manage your own condition.  

Could you tell us more about your experiences of the courses?

Having arthritis has been a lifelong challenge for me. You can build a house, but you still need a toolbox for when things go wrong. Sometimes our disease makes us feel that we’ve no control, but through these courses you learn that there are some things that you can actually control, such as your emotions or your perspective on things. Reframing your perspective, and changing your approach to certain things, can really turn things around and make living with your condition much more manageable. Also, although it’s true that there’s a lot that you already may know about self-management, sometimes you simply get out of the habit. The courses get you to focus on what you can do for yourself once more. That then lifts you out of the rut of simply focusing on the pain and you start to see things more positively. Also, you get to enjoy the support of one another in the group, including the shared experiences. You end up chatting about really practical things, such as how to prepare to meet with your consultant and information around your medications, or meditation and relaxation. They can be very simple things, but they can make life a lot easier. The courses are very empowering. I come away feeling like I’m in the driving seat again, and that truly makes a huge difference in all aspects of my life.  

In terms of the helpline, can you give us any insight into what you hope callers might come away with, after speaking with a volunteer?

Callers can be quite anxious and worried initially, but I’ve been there before so I totally understand those worries. Often, it’s not just about giving information; it can simply be about helping that person at the end of the line to feel heard and understood. I've been trained in active listening, and reflective listening, so that can be helpful when someone is looking to share their struggles and their worries. At the end of the day, we all have our own answers – we often just need the space and the right environment to access them. Somebody might come on the call, and they might be in a lot of pain, or they’re struggling with being heard, or their family might not be understanding. And then, when they have an empathetic ear, the relief is almost palpable through the phone. Arthritis is a difficult condition. It’s hard to diagnose and, of course, it doesn’t present the same symptoms every day, so sometimes you doubt and question yourself. It’s known as ‘the invisible disease’, and that can feel quite lonely. I think callers to our helpline find it really reassuring that someone is there for them; they feel truly heard and understood. I hope that’s what they take away with them at the end of a call.  

"The condition can consume you, so it’s important to manage that and to take control of the things you can control"

It must be challenging at times - for instance, when someone is in pain or feeling down. Do you feel supported in your role?

Yes, very much so. I feel very blessed with Peter Boyd, the Services Support Manager at Arthritis Ireland. Sometimes we might get straightforward and typical calls on the helpline, such as maybe dealing with work issues while experiencing a flare-up or trying to get a referral. But there can also be tough, emotional calls, such as when the impact of someone’s condition on their relationships is significant. I really feel for people and those calls stay with me for a while. But we can do a debrief after these calls or, if I feel like the caller needs more support from us, we’ll discuss the various options and contact them again. Chatting it over can help. I’m very mindful of striving to give a highly professional service. But we are all human at the end of the day, and we can judge ourselves harshly. If I’m worrying about whether I handled a call well or not, it’s very reassuring to chat through it with the team and with Peter. It feels good to know it’s a shared responsibility and that you’re not on your own. 

What do you tend to say to someone newly diagnosed while you're on the helpline?

To someone newly diagnosed, we’ll discuss where they are with their diagnosis. It very much depends on their needs on that day. Some people can be quite anxious so, often, the first thing I would say is, “It’s really good that you finally have a diagnosis and that you have a team now that will work with you.” I might explain about rheumatologists and nurse specialists on their team – great resources to have when you might have further questions down the line. Sometimes, people will go into worse-case scenarios. So, my first word of guidance would be to leave Dr Google alone – if it was that easy, we’d all have all the answers. But the disease progresses over many years and keeps changing. I give them hope and try to take the fear out of it. Sometimes they might envision themselves living like a much older person, with very restricted movement, but I try to keep them on course and remind them that there is better medical intervention now. Things have improved massively. The difference that early intervention makes nowadays – such as preventing further joint damage - is huge. Also, the medications offered, and the research being carried out have impacted the whole area so much. I would then refer people to our website; a trusted website with scientifically backed information, and I would also suggest they read our blog or our booklets or listen to one of our podcast all of which have brilliant tips and information. 

"I can almost feel the relief from down the line and that’s so rewarding. You feel that the caller is going away feeling more hopeful. So, in that way, I really see my role as trying to alleviate the fear, and also to give them hope.”

And how about anyone who is experiencing a flare-up? What would you say to them?

Again, I strive to really listen. I would usually check with them that they have linked in with their nurse specialist. I might also suggest that it may be a good time to start recording a pain journal, providing a record of symptoms to bring to the next appointment. There are the simple suggestions then, such as applying a heat or ice pack, and checking in with their GP to manage pain relief. I also might probe them with questions designed to get them to think about what might have possibly triggered this flare up. Maybe there is no reason, or they have simply been pushing themselves a little too hard recently. I might suggest that, instead of pushing through the pain, it’s time to cut themselves a little slack and maybe take more rest. But life goes on, whether you’re well or not, and there might be older parents or children with needs, and that’s the aspect that is so hard, as arthritis can be hidden. Those dependents have expectations. If you broke your leg, those expectations might not be there but, if you’re experiencing arthritis in your knee, others don’t recognise it so much and those expectations will keep going. I try to validate callers by reminding them how much bravery and courage they have, even putting one foot in front of the other on the tougher days. It’s so important to validate their pain and their struggles as best you can. If you can empower someone, it can make all the difference. For someone experiencing pain, and if they feel they’ve nowhere to go, it can be never-ending. It’s about trying to break that cycle by encouraging them to try something they hadn’t thought of before – even something as simple as emailing their nurse specialist for advice.  

What do you see as hopeful about the future for those living with arthritis Margaret?

Things have changed so much over the decades since I was first diagnosed. Today, the medical team has grown, and it’s also much more interactive with the patient. As a result, I think that people are significantly more proactive in managing their condition, which enables them to maybe live a more ‘normal’ life, and to achieve all the things they planned to do before they developed arthritis. Another thing is that there are many more options now, in terms of medications, with biologics and immunosuppressants. There are also fewer side effects than there were years ago. When people are diagnosed early and are treated with biologics, someone outside of them may not even realise they have it. Some of these people hold key sporting roles in the country, playing on county teams, and nobody has a clue they have arthritis. The support is also so much better. Arthritis Ireland is at the heart of that support, as a professional body providing support and information, as well as access to top consultants and researchers in the field. But it’s also the empathetic tone we communicate in. We recognise how big a challenge it is, and how much is involved in dealing and coping with the disease and that is now at the centre of everything we do. It is now much more person-centred, rather than medical-centred. The patient is now very much more involved in their treatment and management of their disease now than they ever were.  

“If you can empower someone, it can make all the difference. It’s about trying to break that cycle by encouraging them to try something they hadn’t thought of before – even something as simple as emailing their nurse specialist for advice.”

And what about our knowledge and education around arthritis?

Yes, there have been huge strides made in our knowledge of the condition, and in sharing that. For instance, we now know that, despite it being challenging, exercise can be your best friend when you’re living with a chronic condition like arthritis. This is important in helping to keep the joints moving, but also in terms of recovery after a procedure, such as knee replacement surgery. There is sometimes a reluctance, but exercise is crucial in order to recover well from an operation like this. There are so many benefits. Even just thinking about the social aspects of exercise – it genuinely lifts you up. With pain management, staying fit and healthy is so important. Exercise has really kept me going all the years. I manage to live a full life with arthritis, and really try not to be defined by it. I’m a sister, or a friend – I'm not just someone who has arthritis. The condition can consume you, so it’s important to manage that and to continually put yourself back in the driving seat and to take control of the things you can control.  

Finally, in your own words Margaret, what would you see as a successful call that you would typically handle as a helpline volunteer?

If someone came on and they were anxious, or they were stuck or worried about something. And, if I managed to help them to release the stress of it, by maybe helping them to see it in kind of a less emotional way - by offering them choices and options - then I would deem that successful. In those situations, I can almost feel the relief from down the line and that’s so rewarding. You feel that the caller is going away feeling more hopeful. So, in that way, I really see my role as trying to alleviate the fear, and also to give them hope. If I can even make a little difference, then I’m happy with that. For me, volunteering is actually a form of pain management, in that each person I speak with reminds me how lucky I am, in a lot of ways. They might remind me of previous flare-ups, and where I might have been at various points of my condition, but also how I got through those periods. I think people can feel that on the other end of the line. As I said, you’re the team leader of your condition and you’re the one in the driving seat. It’s so important to try to approach arthritis in that way if you possibly can. I’m able to offer hope because I feel hopeful myself. It’s sometimes as simple as that.  

Thank you, Margaret, your insight has been wonderful!

To access the Arthritis Ireland helpline, please call 0818 252 846 0r email [email protected].