Adapting to life with long term conditions – Anya de longh

Anya de longhI am a 22 year old with 3 long term conditions diagnosed in the last 18 months: Chiari malformation, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos syndrome.

These conditions have had an enormous impact on my whole life. I have been unable to finish studying at medical school, cannot work full time at present and have had my hobbies and lifestyle pulled from under my feet. As a young person, I find this impact very upsetting and frustrating, but also difficult to convey to medical staff.

Although I have a good degree of independence, being at the milder end of the spectrum of my conditions, my life can often feel like one long doctor’s appointment (between chasing letters, collecting prescriptions and appointments), when it should be filled with a lot more fun!

I find the few days’ aftermath of an appointment the hardest time – some questions may have been answered, but many more are always created, with often no solution offered. Facing another long wait until the next appointment, I am left feeling vulnerable and isolated. Feeling supported in between appointments by specialist nurses would be a great help and provide reassurance. Co-ordinated support for patients needs to be considered – one of the most stressful aspects of being a patient for me is not knowing who to ask about what, from minor worries to the big questions for each condition.

This experience has had an undeniably large impact on my mental health – something I do not feel has been addressed by my doctors. I would like to see the emotional and psychological wellbeing of long term condition patients being taken into consideration by doctors just as much as physical symptoms. Integrating all aspects of my care – physical and psychological – and my doctors recognising their specific and holistic responsibilities would have made the experience significantly easier.

The most helpful thing for me has been addressing my mental health. I have seen a counsellor and learned a relaxation technique, autogenics. I have just started a course of CBT (cognitive behavioural therapy). These have made me feel more positive despite my continuing ill health.

This change in attitude stemmed from attending the Expert Patient Programme (EPP) course. I had previously been very stressed about the lack of control I had about my health, appointments and treatments and I despaired when comparing my life now to others. The course taught me to have action plans each week for achievable goals – something that has helped me get things done, and also proved beneficial for my psychological state!

In terms of quality of life, for me, the EPP course has been better than any drugs I have taken. I self-referred myself to the counsellors, to CBT, and to the Expert Patient Programme. I would like to see these things offered automatically to patients as part of the care pathway for long term conditions – the potential benefit is too great to leave to chance encounters with the right information for self-referrals. Self-management is not always easy (I still get frustrated by many aspects of my situation), and I had to be in the right frame of mind to start it. I would strongly advise doctors to consider the EPP course alongside mental health support for patients as part of co-ordinated care.

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