Coping with a diagnosis of a chronic illness

[TeenHelp]

Coping with a diagnosis of a chronic illness
By Harrison (HeavyDirtySoul)

A chronic illness is any illness that lasts for a long time (usually more than three months). Some examples of chronic illness are CFS/ME, Elhers Danlos Syndrome, arthritis and HIV. Some are eventually curable, others can go into periods of remission and relapse, and some can be controlled with medications. Many people with chronic illnesses are considered to be disabled due to the way the illness affects daily life.

Receiving a diagnosis of a chronic illness can make a person feel a whole range of different emotions. Every person will deal with it slightly differently, but all of the emotions are valid, even if what you are feeling is not what you expected to feel. You might feel scared, both of what's happening to your body, and of what might happen next. You might feel sad, maybe because your plans for the future will have to change. You might feel angry at yourself, at your doctors or at the world around you. If you're religious, you might find that you question your faith. Or, you might feel relieved that you finally have a diagnosis or a treatment plan.

The people around you, like your family and friends, might not understand what you're feeling. If they haven't experienced receiving a diagnosis of this magnitude, they may belittle your feelings, expect you to overcome them faster than possible, or even ignore them completely. Regardless of how people react, your emotions are valid, and you should be able to express them safely, and receive support.

Although family and friends don't necessarily know what you are going through, a lot of the time they want to understand and they mean well. It can be exhausting trying to explain to them, but well meaning people will often be happy to read up about your illness, so recommending books or websites can be an easier option. People may say things that are upsetting or seemingly thoughtless, like 'get well soon', but most people will understand if you explain why these things hurt. If they don't, don't waste energy trying to get them to understand, as some people never will. Instead, take care of yourself. Stress and unhappiness will often exacerbate symptoms and make things harder for you, whereas the person who made the hurtful comment will forget about it and move on, because it won't hurt them.

Support after receiving a diagnosis shouldn't just be medical care for your illness. If you have a good doctor, you should be able to talk about your feelings with them. They may be able to recommend a support group for patients. If not, a Google search might help you find a group. Groups aimed at your age and particular diagnosis are better, but really, it's just good to have a listening ear and people you can share with who understand what you're going through. If you can't find or are unable to attend a support group, there are plenty of online groups, for example on Facebook, where you can talk with people going through the same things.

You may also be offered a referral to a mental health service to see a counsellor or therapist. This can be helpful, as they will be non judgemental about your feelings. If this is not offered and you want to explore this option, in some areas there are services you can refer yourself to, or there may be a counsellor or disability contact at your school or college who you could talk to.

Journaling is another way of expressing your feelings about your diagnosis. Your doctor may have already asked you to keep track of your symptoms, so if you're already doing this, adding in a section about how you're feeling should be relatively easy. Keep track of the good things as well as the bad. Your body and mind are closely linked, and you may find patterns between your moods and your symptoms. If you have access to a smart phone or tablet, there are many different apps that can help you do this, like mood trackers and symptom trackers.

Another thing to remember is that it is not weak to accept help. Although people talk about 'beating' diseases, in reality a diagnosis of a chronic illness is not necessarily something you can beat. Instead, you have to learn to live with it. Accept help where it is offered, and learn to ask for help when you need it. You may find that you have to use mobility aids or take medication. These can be scary changes to make in your life, and society won't make it any easier for you. But regardless of what people say, using equipment or taking medication that helps you is not giving up. It is braver to use an aid than to go without.

After a diagnosis, life can be confusing and it can be difficult to know what to do next. Listen to your health team, research your illness, find someone you can talk to and take time to care for yourself.