Living with AS


My feelings

The news that you have Airway Stenosis can stir up all sorts of emotions. This is a very natural response. Everyone responds differently to finding out they have a serious condition, and you may feel upset, worried or confused. You’re feelings might not all be negative, for example, you might also feel you have a different perspective on your life. As you come to terms with your illness, you may have some of the following feelings:

  • Depression
  • Fear
  • Worry
  • Frustration
  • Denial
  • Guilt or blame
  • Wanting to be left alone
  • Feeling isolated

There’s no ‘right’ or ‘wrong’ way to feel, and your feelings might change along the way, depending on what is happening and how well you feel.

What can I do about it?

There are several things you can do to deal with these feelings. The key things are to:

  • Understand your illness
  • Talk to your doctor
  • Talk to the people close to you
  • Talk to someone outside your own friends
  • It can sometimes be difficult to talk to people close to you about how you feel. If you are having problems, it can be helpful to talk to a specialist in dealing with emotional issues (e.g. a psychiatrist, psychologist, or counsellor) or a religious leader in your faith if you are religious
  • Doing positive things
  • This isn’t always easy, and it certainly doesn’t mean feeling happy or optimistic all the time. Not only is it normal to feel frightened or upset, this can actually be a sign of strength, as it can show that you are facing up to your illness. This is more about feeling a full range of emotions, so that you’re not overwhelmed by the negative side of things. Sometimes, people find they can’t think about anything else, or even that they don’t feel they should be cheerful when they have a serious illness, especially if people close to them are upset. However, your symptoms and treatments can get you down, and doing things that make you feel good is a really important part of getting well again. Try to keep doing the things you enjoy; chatting to a friend on the phone, watching a film or a comedy, spending time with family, reading a good book, or going out for a walk. You might not be able to do everything you could normally do, especially while you’re having treatment, which can be frustrating. However, some people say that they find it helpful to try to do something positive every day; and you might well find new things that you enjoy, from painting portraits to setting up a website!

 

Your doctors and nurses:

The first people to ask are your doctors and nurses at the hospital. They will be able to give you up-to-date information based on your own individual case.

PLEASE NOTE: There is an awful lot of information available on the web, some of which is excellent, but some of it can be out-of-date, inaccurate, or confusing. Every person is different, and treatments for Airway Stenosis have improved over the years, so some of the things you read about might not apply to you. If you are worried or find the information you come across confusing, talk to your doctor or nurse.

 

Books and scientific publications:

If you want more in-depth scientific information, you can also search in medical textbooks and look for articles in scientific journals. This information is quite technical and specific, so you may need to go to a university library, the British Library, or you can search online (subscription fees normally apply). You can also search on Google Scholar which is a free search tool that will give you access to overviews of research and some free articles.

 

Talking to your doctor

Your doctor can help with emotional issues in several ways, from giving you information about your illness and treatment, to prescribing medication, to referring you to a specialist like a psychiatrist or counsellor. They might not be aware of how you’re feeling, so don’t be afraid to tell them if your having problems.

Your doctor can give you up-to-date information, and will know about your own individual medical situation. This is very important, as the treatments for Airway Stenosis have improved over time. Each person is different; so the things you hear about other people’s experiences might not apply to you.

It’s not uncommon to feel anxious when you’re going to see the doctor, and there can be a lot of information to take in. To get the best out of your time with the doctor:

  • Write a list of things you want to ask
  • Take a close friend or relative with you. They can listen too, and might remember anything that you forget. You can also have them ask questions for you if you find it easier
  • Ask your doctor if you don’t understand something or you’d like them to repeat something
  • Don’t be afraid to discuss emotional problems, as there are things your doctor can do to help

Talking to the people close to you

Our friends and family are very important to us, and they can be a very valuable source of support. However, talking about your illness isn’t always easy, especially if you’re feeling angry or upset. Your family and friends might also be frightened or upset, so communicating can be difficult. Talk about your illness can be helpful. You can:

  • Help your friends and family to understand about your illness and what’s happening
  • Tell them how you feel
  • Reassure them that you know what’s happening

Although your family and friends can give you a huge amount of help and support as you come to terms with your illness, things aren’t always easy. Some of the problems you might face are people trying to do too much for you, not giving you enough space, or being in denial. They may well be doing this because they care about you and are worried, and it can be difficult to deal with these problems, particularly when emotions are running high. You can try:

  • Try to tell them how you feel
  • Stay in control
  • Explain that staying as active and independent as possible and having a sense of ‘normality’ is important to you; staying as active and independent as possible is an important part of adjusting to your condition
  • Don’t be afraid to ask for help or advice when you need it – people are usually very glad to be able to help out and to feel involved

Getting support is essential, and it’s good to talk over things like options for treatments. However, you might feel under pressure to do what other people think you should do. Don’t forget, the final decisions are up to you and your doctor. Try to keep people who are close to you in the loop and talk things through with them… Explain to them why you and your doctor have decided to do something, like changing your treatments, could help them feel less anxious and let them know that you know what’s happening and that you’re in control. Let them know when you need a bit of space; you can try explaining that you would like some peace and quiet, so that you can rest. If you are having problems, you can seek help from someone outside the family (see the ‘talking to a specialist in dealing with emotional issues’ section).

We’ve talked about how discussing your illness and getting information about it can be useful. However, everyone copes in different ways. You may feel at the moment that you would rather not know about your illness, and don’t want to talk about it. This is sometimes called ‘denial’. If you feel like this, you may need to tell people quite firmly that you don’t want to talk about your illness for the time being.

You might find that your friends and family are in denial, as they may be frightened. They might try to play down your feelings and symptoms, and might change the subject if you try to talk about your illness. You can try:

  • Telling them how you feel
  • Explaining that talking to them about your illness will help you
  • Reassuring them that you know what’s happening

Communicating with family and close friends about your illness can be difficult, and sometimes it can help to talk to someone outside the family who is not emotionally involved.

Talking to a specialist in dealing with emotional issues

There are several people you could talk to if you’d like support with emotional issues. Depression and anxiety tend to be common in people with chronic illnesses, as are all sorts of other emotions and relationship issues. You might also be having problems coping with your illness, or with symptoms or treatments, and a specialist like a clinical or health psychologist could help with this. You might also want to talk to someone about communicating with your family and friends.

Some of these support services are available through the NHS, and you can ask your doctor at the hospital or your GP what these options are.

There is a wide range of individuals and organisations that offer counselling, but it’s important that you make sure you see someone who is properly qualified and accredited. You can find a list of qualified therapists through:

Other organisations include: