Raising awareness of, and supporting, young people with long-term health conditions
What I Have Lost: Independence. Happiness. Sleep (lots of it). Friends, old and new. Security. Innocence. A feeling of self-worth. Trust (in myself). Time. So much time spent worrying about what was wrong with me, or whether anything was at all. Time in hospital. Time alone. Time being happy. Time feeling alive. Abilities. The ability … Continue reading Lost and Gained: Mirren
Hi, Heather here. This week we are all talking about what we have lost and gained through our experiences of ill health. Some of these might be focussed on positive life choices, but not mine. Background I was diagnosed with Lupus (SLE) almost exactly 7 years ago and despite numerous severe flares (and multiple weeks of … Continue reading Lost and Gained: Heather
What I've lost: independence. The ability to do something for myself. Yes I can still wash. Yes I can still dry but no I can’t cook my own meals and walk a few steps without falling. Spontaneity. Everything I do has to be planned,prepared and executed with the utmost precision. I can’t just pop to … Continue reading Lost and Gained: Jack
When I hear loss and gain I think more about sacrifices I have to make and how my experiences have changed my personality. When I was first diagnosed, it was all a bit dramatic and it wasn’t clear what my life would be like so at that stage, I hadn’t gained or lost anything. However, … Continue reading Lost and Gained: Kitty
I think that a year ago, if you had asked what I had lost and gained I would have struggled to think of what I had gained, and two years ago I would wonder why you were even asking. Now though, I feel able to think about the gains and see that they truly are … Continue reading Lost and Gained: Ally
When answering ‘what have I lost or gained because of disability?’ is difficult because I don’t have one. I have not had to deal with the struggles of diagnosis, hospital stays, and always putting my health before everything else – it hasn’t been central to my day-to-day life. I’ve never had to face the same … Continue reading Lost and Gained: Ross
Having a long term chronic illness can result in feeling like you are ‘ losing’ lots of things. Being diagnosed at a young age perhaps lessens these feelings; growing up you only pick the things which you are capable of. For instance, I never really have engaged in sport, apart from climbing from time to … Continue reading Lost and Gained: Beth
Jenny, 22 Jenny: When I got diagnosed it felt like I had gained this huge weight of responsibility, like I had this massive load to carry around with me at all times. Luckily with Type One diabetes the advancement of the medication meant that it can fit in a little case, so the weight was … Continue reading Jenny: Lost and Gained
Hospital stays are a seemingly inevitable part of having a long term health condition, and can be difficult for lots of different reasons. There’s the isolation, stress, worry, missing out on things and the fact that you usually feel completely rubbish. We are writing this, Beth and Ally as both patients and visitors, and Ross … Continue reading Managing a Hospital Stay
by Niamh Adams When you are diagnosed with a chronic illness you think the fight is over, you think you will get the help and support you need. Little did I know that this was only the start of my journey in becoming my own advocate and fighting for the support I needed. I first … Continue reading Finding The Right Doctor For You
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