Living alongside a condition

Sometimes, living with a condition whether it be medical (e.g. diabetes, cystic fibrosis, chronic fatigue) or developmental (e.g. ADHD, ASC, Dyslexia) can be hard. Many young people have experienced feeling stressed, worried, angry, fed-up or unhappy at times with their condition. These feelings are completely normal, but at times may be overwhelming or difficult to share with others.

These feelings may also impact on what we think about ourselves or our behaviour. We may not feel like joining in on things we used to like, or spend more time alone rather than with friends or family. While this is normal for short periods of time when we have had a tough day, it is not good for our health for weeks or months at a time.

Ongoing difficulties or distressing feelings may cause a lot of unhappiness and make living alongside a condition 10 times worse. These feelings may also impact on friends and family, especially if we take our frustration out on family members or if we withdraw from friends and social life. Our family may not know what to do or how to help and friends may feel left out.

Managing a condition as well as the demands of daily life can be difficult, but not impossible. It takes time to find ways to deal with the difficulties caused by the condition and the right balance between what you need to support your condition with and what you need just to be yourself.

Help and support may be available from your family, friends, school or clinic. Medical support/advice may be sort from your named nurse specialist, School nurse, GP or paediatrician. Developmental conditions may be supported through the paediatrician, psychiatrist, CAMHS therapist, GP, school SENCO, mentor or teacher.  It is easy to overlook these resources in times of crisis, but often the solution is close by, and asking for advice, help or support is the first step to getting the situation addressed.

Sometimes,  talking to a CAMHS therapist or clinical psychologist can help you to make sense of the current difficulty and identify sources of support. Having the opportunity to do this with someone outside your daily life can be a good opportunity to speak frankly about your difficulties without feeling there will be consequences.

In addition, a therapist or psychologist may act as a ‘voice’ or ‘advocate’ for you if difficulties need to be shared with others, professionals, medical staff or school staff, as this can be hard to do without support.

Having an understanding of current difficulties may also identify how the problems started. Sometimes past experiences, distressing events or overwhelming emotions may cause the difficulties or delay your responses to them.

If you work with a therapist or psychologist, they will aim to work in partnership with you to find a way to cope with the difficulties and help you live alongside your condition in a more positive way. This support may involve a one-off consultation or several appointments to work towards an agreed goal.

In the meantime, here are some helpful strategies to manage living with a condition and the problems it can sometimes bring.

Helping to identify the problems:

1)    make a list of all the areas your conditions impacts on:(e.g. my ADHD means I find it hard to concentrate in maths, which means I get told off for not listening)

2)    rate each one of these on a 0-10 difficulty scale (whereby 0=no difficulty and 10 very difficult)

3)    look again at the list and tick those that are the very difficult.

4)    think about the environment and the people these very difficult problems occur with. Then, think about what you would need to happen to make this less difficult.

(e.g. My ADHD means I find it hard to concentrate in maths. I need to let my teacher know about my condition so they understand and maybe come up with some ideas of how to help me with this)

Helping to voice a young person’s needs:

1)    encourage a young person to write down questions, opinions or suggestions which they would like to be addressed, but finds it hard to express these. Keep it in the young person’s words where appropriate.

2)    next, identify who will read these out or if the young person would like to do it.

3)    help the young person practice this if they choose to do it themselves

4)    arrange a meeting for the young person to be present at the reading or to read themselves their agenda while they are supported by their advocacy.

This will help a young person practice their voice and appreciate the importance of their opinions and help them feel part of the support systems around them.

Sharon Twigg

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