A guide to coping with isolation during your treatment

Many people say that spending time in isolation can feel like one of the biggest challenges when dealing with aplastic anaemia.

Coping with isolation will mean different things for different people. You might be dealing with isolating at home or you may be in hospital. It might mean being away from your work or studies. You may be experiencing a longer stay in hospital while your medical team stabilise your illness and decide on the most appropriate treatment, or after a transplant, which will include spending some time on an isolation ward.

You may have general feelings of being ‘different’ and feeling on your own because of aplastic anaemia. This might be because the path your life is taking is currently different from that of your friends or the life you thought you would be living right now. Everyone’s experience is different, but there are some common things you can do to help you get through it. 

Keeping busy was key.

When left idle, my mind would fixate on the negatives and the pain, which makes an unpleasant experience unbearable.

Some of the things I’ve done during my isolation periods are watching every TV show on Netflix and Amazon, reading a series of books I’ve always wanted to read, taking up calligraphy, learning to teach English to foreign children, and playing video games. However, the most important thing was to make sure I saw my friends and family. While you are isolated, it doesn’t mean you have to be lonely. When I saw certain individuals, it was amazing how quickly I could stop feeling so ill.

- Ben

Why might isolation be required?

A period of isolation might be required to avoid infection because of your reduced immune system.

If you have anti-thymocyte globulin (ATG) treatment or a transplant, it can take some time for your new immune system to develop. During this time, you will be at high risk of infection, so precautions need to be taken to keep you safe while your immune system develops. Isolation is the most effective method of avoiding infections.

When will isolation be needed?

Periods in isolation are likely to be needed in severe cases of aplastic anaemia, and may depend on how an individual is responding to treatment. 

Time in isolation will always be needed during and after a stem cell transplant, which will begin in hospital and then is likely to lead to a period of home isolation. 

Periods in isolation will become less intense as time passes. After a stem cell transplant, once your blood cell count starts to increase, you will be allowed to venture out of your room, initially for short periods of time. You are likely to be allowed a few named visitors, and as each hospital has its individual policy for this, they will tell you who is allowed to visit and when. Your visitors may need to wear personal protective equipment, such as masks and aprons. Even if this equipment is not required, they will need to wash their hands thoroughly before coming in to see you. 

If they feel ill, such as with a cough, cold or stomach ache, they must avoid visiting you, even if this is hard for everyone. Keeping you well is the top priority.

Typically, you might have around 6–12 months away from work or studies, but this time is not likely to be spent fully in isolation and you will be building up to returning to everyday routines. 

It is important to be aware that there can be local differences in advice around isolation. Some consultants and other professionals support ‘getting back to normal’ more quickly by resuming activities that involve social interaction. Others may take a more cautious approach. Their advice and approach will also be influenced by your health and how well you are responding to treatment. Always follow the advice of your medical team first and foremost, and use these tips to assist you.

Reducing the impact on your emotional and mental health

You may feel that your loved ones or family members are being overprotective and controlling. It’s a difficult time for them, as well as you, and they are undoubtedly trying to make things better for you. If, however, you feel that they are stopping you from being able to make your own decisions about how to deal with isolation, it’s a good idea to talk to them about this and work out a plan together. When they start to drive you crazy, just remember it is because they love you and want you to get well as soon as possible. 

Staying connected with your friends and loved ones is important during periods of isolation. There’s nothing to stop you talking on the phone, chatting online and using visual media such as FaceTime, Zoom, WhatsApp, etc. Your life will feel very different from the lives of friends in the outside world, but that doesn’t stop you from being interested in what’s happening out there. Keep talking to your friends about what’s happening to you, if you feel comfortable doing so. 

Sometimes things are a bit too personal or embarrassing to share with friends and family. In these circumstances, approaching a counsellor or someone who is trained to deal with these situations can be a welcome relief. It’s a good idea to find out about these additional services that might be offered at the hospital and how to access them, before you might need them. You are always welcome to contact The AAT support team to talk things through. People often find this helpful when they feel like they are talking too much to friends and family, or when they just want to talk about aplastic anaemia without having to explain it first. We also offer a range of emotional support services including courses with expert psychologists.

In this video Barbara talks about the value of connecting with others via The Aplastic Anaemia Trust Patient Support Facebook group:

If you’re sharing anything on social media, be extremely careful around privacy issues. Think hard about who will be viewing this and what you want people to see and know. It can be very tempting to document your entire time in hospital, but in years to come, you may wish that you hadn’t done this. You should also discuss this with your family and friends and agree what you are happy for them to post. A positive use of social media could be to raise awareness among your friends and family about aplastic anaemia and the need for bone marrow donors.  If you are staying in hospital, you should be able to take certain items in with you to make your days pass more quickly. You might also be able to take in things from your room or home that make you feel more comfortable.

Setting up a routine for yourself can make you feel much better. Start off with something as simple as getting up and getting dressed or looking forward to a favourite TV programme at the same time each day. Catch up on a hobby, schoolwork or study, or check in on what’s happening at work if you feel able to do so. Remember that right now your recovery takes priority, so while it’s a good idea to stay in the loop, don’t push yourself too hard. 

I was allowed to take some things into hospital to make my room a bit more ‘homely’,

such as some cushions for the couch, a clock, a mini fridge for drinks, and a new plastic storage unit.

As I was in a Teenage Cancer Trust room with a wall decorated with a photo of trees, we joked about being at Centre Parcs. Mum passed the time with a new hobby of embroidery, so we didn’t have to chat all the time when I wanted quiet or to game. The staff were wonderful and also cheered us all up. A special thing they did was assign a person my age as my health care assistant, so I had someone nearer my own age to chat to. Also, we were allowed to take ice pops in unfrozen and put them in the ward kitchen freezer.   

- Nick

A routine really does help to make the days go by.

Waking up at a similar time each day, having breakfast and a shower, and then having a specific task to do each morning, was vital as it helped me ‘get on’ and stay motivated for the rest of the day

- Daisy

Working on new projects can help the time to pass quickly, even something as simple as tackling a jigsaw. Some people use the time to learn a foreign language or to refresh a hobby or skill. 

Try to keep your surroundings tidy and clean. Whether this is a hospital ward or room, or your own bedroom at home, having a pleasant environment will have a positive effect. 

Accept that some days will feel easier than others. There isn’t always a clear reason for this, but on ‘bad days’ tell yourself that tomorrow is another day.

If negative or low feelings continue, especially for two weeks or more, it’s important to talk to your medical team about this. The Aplastic Anaemia Trust team are also here for anything you might want to talk about.