Dealing with uncertainty in diagnosis and treatment

Being diagnosed with axial spondyloarthritis (axSpA) can be a shock. It is normal to feel frustrated, upset, and overwhelmed. Afterall, it is a lifelong condition that can require many adjustments.

Part of adjusting to life with axSpA is coping with the uncertainty of living with a chronic (long-term) health condition. You may be asking yourself; ‘how will my arthritis affect my life?’, ‘will I still be able to do the things I normally do?’, ‘will I have to stop work?’, ‘will my condition get worse?’.

Dealing with uncertainty can take a toll on your mental wellbeing. This can lead to feelings of anxiety, stress, or depression. These feelings can make pain more intense and reduce how much you can put up with pain.

Finding the right support and treatments can take time. However, there are strategies that can help you manage your axSpA, helping you feel more in control.

Ways to help cope with some uncertainties of living with axial spondyloarthritis 

Before a diagnosis

Being diagnosed with axSpA can take time. The average time from symptoms to diagnosis is approximately 5 to 7 years. Waiting for a diagnosis can be extremely difficult, and it is common to feel many different emotions. Put this on top of trying to cope with your symptoms and it is easy to feel overwhelmed.

Below, is a list of things you can do to cope better while waiting for a diagnosis.  

• Believe in yourself. If you feel like your healthcare provider is not listening to you, try to communicate your concerns with them. If you are unsure about something, ask questions. If you feel like you’re still not getting anywhere search for another health professional who will listen to you.
• Talk to family or friends. Having people around you to support you is important to help cope with the uncertainty of a diagnosis. Seeing a trained professional, like a clinical psychologist can also help you to deal with these feelings. Speak with your doctor about a Mental Health Treatment Plan for you. Under a Plan, you can claim sessions with a clinical psychologist with part of all of the costs covered by Medicare will cover all or part of the cost. If you have private health insurance, you may claim some money back through your insurer.
• Finding support groups. Some people find it helpful to connect with a support group. Hearing other people’s experiences is a good reminder that you are not alone.
• Find out more information. You can learn about axSpA and what treatments and services are available that can help you manage it. This can help you understand more about your disease and how to manage it.  Knowing more about the condition can help you feel more prepared. Call the Arthritis Infoline on 1800 011 041 to find out more information or talk your doctor or healthcare team.

After a diagnosis

If you have been recently diagnosed, it is normal to feel uncertain about your future. The good news is that with the right treatment and self-management, most people with axSpA can lead full and active lives.  See the Roadmap for ankylosing spondylitis resource for information on the treatment and management of axSpA. Speak with your doctor about accessing allied health services, such as hydrotherapy and physiotherapy, under a Chronic Disease Management Plan. Under a Plan, you can claim up to five allied health sessions with part or all of the costs covered by Medicare. For more information on axSpA, you can call the  Arthritis Infoline on 1800 011 041. 

What is the right treatment for me?

Your rheumatologist will decide your initial treatment and oversee the long term management of your condition. Initial treatment can include a combination of physical therapy, exercise and medication. All medications have risks and benefits. It is important to talk to your doctor, pharmacist, or nurse about how each medicine should be helping you and what risks it might have. Make sure the person giving you your prescriptions knows about your other health problems, this can help them choose the best medicine for you.

You should understand what side effects the medicine might have, including what to do or who to speak to if you feel any side effects. Talk to your health care professional if you have concerns about side effects, safety, or cost.

Each person responds differently to medicines. You will need to work with your rheumatologist find the best medication and dose for you. This can take time, and you may need to change or add medicines over the course of your treatment. Finding the most effective medicines with the least side effects, can make a real difference in controlling your axSpA.

Unpredictability of symptoms 

Living with axSpA can be unpredictable. Even with treatment, there may be times when your symptoms flare.  A flare is when the disease is more active, causing increased inflammation. You may have more pain, stiffness or swelling than usual. The unpredictability of symptoms can make you feel anxious about doing daily activities.

Although you can’t control when your symptoms will flare, you do have control over the strategies that can help to manage them. Below, are some suggestions about how to self-manage your axSpA.

• Understand your condition. Understanding how your axSpA is affecting your body may help you feel more in control and make informed decisions about your own care. You can take note of the different types of treatments, your symptoms, and the times when it feels better or worse.
• Know when to rest. Knowing when to slow down and let your body rest is important for managing your symptoms. You may have heard of ‘pacing’, which refers to planning your activities to balance your time between doing them and resting. This can help protect your joints while doing the things you want to do.
• Keep active. Regular physical activity is one of the most effective treatments for axSpA. You might think that being active will make things worse but moving will help you better manage your symptoms. Gently moving the affected joint(s) when you’re having a flare may help to reduce stiffness. If you are having a flare, it is better to let your body rest and limit physical activity until you are feeling better.
• Flare management plan. Having a plan for when your symptoms flare can help you to better manage them. Use this action plan to discuss with your healthcare team the best way to manage flares.

What will the future hold?

Understandably you may be worried about the future. It is impossible to know what the future will hold. Living with the hope of your axSpA going into remission (when your symptoms are under control) and the worry of the disease becoming worse can make you feel stressed and anxious. It is important to remember that with an early diagnosis and the right treatment many people can keep their axSpA well-controlled.  Doing your best to maintain a healthy lifestyle to manage your axSpA and your overall health is important for leading a full and active life as you grow older.  Read our Things you can do resources for more information on ways to help self-manage your condition.

Remember, it is just as important to maintain your mental wellbeing as it is your physical health. Don’t ignore when you are feeling sad, frustrated, or depressed. Talk to family or friends about ways they can help when you are having bad days. If feelings of depression or sadness is making it hard to do daily activities, speak with your GP about finding a professional who can help.

Read more about relaxation strategies and our mental wellbeing resources to understand more about the importance of maintaining your mental health and strategies you can do to help it.