If you know someone with axial spondyloarthritis (axSpA), there may be many ways you could offer them your help.
How that help will look will depend on how serious their axSpA is and what help they want.
An important first step is to try to understand how they’re feeling, both physically and emotionally. So, good communication is important.
It can be tricky to find the right balance between letting a partner, friend, relative or colleague know you’re happy to help, without being over-bearing. But don’t let that stop you wanting to help and finding out if you can.
Help could come in many forms, and it might involve:
- having a chat and hearing about someone’s worries and anxieties
- going to a healthcare appointment with someone
- doing some practical tasks around the home or garden.
Finding out what help, if any, is needed is the important first step.
What should I know about the condition of the person I care for?
It can really help to know what someone is going through if you want to help them.
The word arthritis simply means when a joint or joints are swollen, stiff and painful. Confirm the type of arthritis your partner, relative, friend or colleague has is axSpA and then you could find out more about the condition. Things to think about could be:
- What are the main symptoms?
- What treatment options are there?
- How is this condition likely to affect people over the short, medium and long term?
The person you want to help might be happy to talk to you about this.
Arthritis is sometimes described as an invisible condition, because you don’t always see the pain, stiffness, fatigue and depression. It can also vary from day to day, and from week to week.
Pain from arthritis can be long term and dealing with it regularly for a long time, is not easy.
What do I need to talk about with the person I care for?
Good communication is essential. It’s important that both you and the person you want to help know how the other person is feeling.
You need to agree how to work together so that they’ll feel able to ask if they need extra help.
Respect the wishes of your friend, partner, relative or colleague who has arthritis. Being over-bearing, even when you are being well meaning, could hurt someone’s self-esteem.
Starting these conversations as kindly, gently and sincerely as possible will be greatly appreciated.
Communication will also help you judge how the person you’re caring for is feeling so you can respond in a sensitive way. They’ll need to feel supported and reassured that you don’t resent the responsibility falling on you.
How can I help someone with the physical challenges of arthritis?
You may not be able to do much to ease your friend, partner, relative or colleague’s pain, stiffness, fatigue or any other physical symptom.
They may well need to see a healthcare professional to talk about treatment options.
You might be able to talk things through with them. Things you might be able to discuss are:
- Are they on the best treatment for them? There are treatment and pain relief options for every type of arthritis. You might be able to help your friend find out about these and encourage them to discuss them with their doctor.
- Are they able to keep active? Is there any support healthcare professionals could offer to help them stay active? This might be something you could help with, either in terms of offering support and motivation, or offering to go for a walk, swim or to the gym with them.
If a particular activity is causing problems, encourage the person you’re trying to help to see if there is a different way of doing that task, or if there are aids and adaptations that might help.
If they want to, you could have a chat about the tasks they’re struggling with and write a list of possible solutions and ways to avoid problems. You might be able to help with some, if that’s what they want and you’re willing and able to.
The person you’re helping might benefit from seeing a physiotherapist or occupational therapist.
A physiotherapist is a trained healthcare professional who can help people with medical conditions like arthritis. They will be able to offer advice on exercising, staying active and pacing themselves. The aim is to help people manage their own condition and symptoms.
An occupational therapist can help people with arthritis with tasks they’re finding difficult, at home, school or in the workplace.
People can either get a referral from a GP to see a physiotherapist or occupational therapist. Or they can see one privately.
It might be that the person you’re helping is happy for you attend an appointment with a physiotherapist, occupational therapist or another healthcare professional. This could be helpful for several reasons:
- It might be motivational and supportive.
- You could think of questions or issues that haven’t been covered.
- Afterwards, you could help your friend, partner or relative with some of the aspects of what was recommended.
Sometimes fatigue can be as difficult to cope with as the pain itself. Fatigue has been described as severe and persistent tiredness that doesn’t improve with sleep. It can really affect people’s energy levels and mood.
If someone you know has fatigue because of their arthritis, trying to understand what they are going through and offering to help, could make someone feel a bit better.
How can I help with the emotional challenges of arthritis?
Not surprisingly arthritis can make people feel down or worried.
Try to encourage the person you know who has arthritis to let you know if they are struggling with their mood.
If someone's mood or emotions impact on their quality of life and day-to-day functioning, you should encourage them to see their GP (general practitioner). Their GP can provide information and discuss available treatments, write a Mental Health Treatment Plan for access to a Medicare rebate for psychological treatment (if appropriate), prescribe medication and refer them to a mental health specialist such as a psychologist or psychiatrist (if appropriate).
If you let your partner, friend, relative or colleague know that you are there for them if they need to talk, that can be a big relief. Look out for signs that they are not feeling good emotionally.
Physical activity and exercise can help improve people’s mood. Suggesting going out for a walk, a coffee and a change of scenery might really help.
Try to make sure that the person you want to help knows where to turn if they are feeling down or anxious. The following could also help:
- beyondblue: Learn more about anxiety, depression and suicide prevention, or talk through your concerns with our Support Service. Our trained mental health professionals will listen, provide information and advice, and point you in the right direction so you can seek further support. Phone 1300 22 4636. Email or chat to us online at www.beyondblue.org.au/getsupport
- Head to Health: Provides resources, treatment options and links to trusted Australian online and phone supports. www.headtohealth.gov.au
- SANE Australia: information about mental health and where to go for support. 1800 187 263 (Monday to Friday 9am-5pm) www.sane.org
- Lifeline: 24-hour counselling, information and referral. 13 11 14 (local call cost). www.lifeline.org.au
- CRUfAD (Clinical Research Unit for Anxiety and Depression): information and online courses for depression, anxiety and its management. www.crufad.org
Looking after yourself if you’re a carer
You may not think of yourself as a carer.
But if you’re looking after someone with arthritis, and without your help they’d struggle to cope, you’re classed as a carer.
You may be perfectly happy to care for someone you love and there are many positive and rewarding aspects of caring. But it’s also ok to recognise that in different ways, caring can take its toll. There are things you can do to look after yourself and places to turn to for support.
There can be a financial cost to caring, if it means you need to work less or even give up work.
Caring for someone can affect your mental and physical health. It can be stressful and possibly affect your sleep. Making sure the person you care for has the right support and treatment from healthcare services can be tough.
All this can make you physically and emotionally tired.
It can be difficult to care for someone and find time for yourself. But it’s important to look after your own physical and mental health and well-being. Being healthy and happy is very important to your quality of life, and it will also make you better placed to care for someone.
Try to make time to do the things you enjoy – hobbies, keeping fit and seeing other friends and relatives.
If the person you care for needs a lot of attention, you could see if there is anyone else capable and happy to share the caring.
What benefits are we entitled to?
You might be entitled to benefits if you’re helping to look after someone with arthritis.
Department of Human Services will be able to determine your eligibility for carer or disability support, as well as other concessions such as a Health Care Card. Visit www.humanservices.gov.au
Commonwealth Respite and Carelink Centres (CRCC) provide free and confidential information on local carer support, disability and community services. They can also link you in to short-term, emergency or regular respite care services. Call 1800 052 222 during business hours or 1800 059 059 outside business hours.
Carers Australia provides access for carers to counselling and assistance to manage issues such as stress, loss and grief. Call 1800 242 636 or visit www.carersaustralia.com.au