A young person’s perspective on living with PID

Hannah is 26 years old and is the Marketing Executive for PID UK and Genetic Disorders UK and a member of our Patient Representative Panel.  She has an ‘undiagnosed immune disregulatory disorder’, an antibody deficiency and is affected by Crohn’s Disease and arthritis. This is the text of the inspiring talk and top tips on living with PID that Hannah gave at the Oxford University Hospitals Patients’ Day on Saturday 20th September 2014.

Live the best life you can

Having been diagnosed with an antibody deficiency as a baby, meaning I don’t fight infections in the normal way, I have received immunoglobulin treatment since I was 2 years old. For 16 years I did my infusion intravenously and then learnt to do it subcutaneously when I went to Portsmouth University, 8 years ago.

Living as normal a life as possible

I have always tried to live as normal a life as possible and my parents and sister helped me achieve that, from ballet lessons when I was tiny to roller skating every Saturday, going as fast as I could and dealing with the bumps and scrapes when I fell over, although obviously I did have to be more careful than other children if I hurt myself.

At primary school I had my own little med bag for when I fell over (which happened at least 3 times a week, my teachers even joking they’d have to retarmac the playground because of me, I was an extremely clumsy child and am possibly even clumsier as an adult). This bag contained antiseptic wipes, plasters, gauze and other items that were kept separate just for my use. I did miss quite a bit of school and at times struggled to keep up with other students, which when I was in senior school studying for G.C.S.E’s and A-levels was annoying and at times I became quite despondent because of this but with the support of my teachers I always managed to get back on track, even if it was at the last minute.

Being kitted up to go on holiday

As a family we’ve always tried not to let my having several chronic conditions stop us from enjoying ourselves. We would always take my immunoglobulin on holiday with us and there are more than a few photos of me lying on a lilo whilst doing my infusion, although I have to admit we never let on to the nurses about my infusion process of getting in the pool before getting hooked up! With a letter from my doctor and telling the airline in advance I’d have not only immunoglobulin with me but also needles and syringes, I’ve been able to travel wherever I want to go without a problem. On holiday I take a small first aid kit with me similar to the one I had at school but with antibiotics in it, so that I could take immediate action to clean up any scrapes and prevent any infections from setting in.

Teenage frustration, university and knowing my limitations

Learning your limits is such an important step and as a teenager I did get frustrated often with not being able to do all that my friends did, not only because of feeling unwell but also the tiredness that so many of you will have experienced, however I now make sure I prioritise what I do and make sure if I’m going to have a tiring day I can at least take it slightly easier the following day. I’m lucky that my employers are incredibly understanding and if I need to break up my working hours I do so I can rest I can.

It took me until university to fully come to terms with knowing my limitations and accepting that sometimes there are just some things I could not do. I was also not open about being antibody deficient until my late teenage years and looking back now I wish I had told more about my condition to those I was at school with so they would have understood why I couldn’t do something.

At university I lived in halls during my first year, and made sure to join different clubs including Street Salsa and Hockey making sure I stayed reasonably active when I could, and when I wasn’t able to take part in training I made sure I still made it out in the evening for the socials, when I had both some unforgettable and forgotten nights!!

Working and being a volunteer

As a child and teenager I helped on the Primary Immune Association (PiA) boat trip each year, where children and young adults had the chance to meet other who were immune deficient and from there I realised I wanted to do more to help our community.

After graduating from university and working for a couple of years I decided due to a diagnosis of arthritis to move closer to home so quit my job and moved away from Portsmouth. I’ve never been good at just sitting around all day doing nothing letting my mind wander, even when feeling ill so I always have something on the go, knitting, a puzzle, attempting to make clothes or even just a really good book.

Once I’d moved house and accepted that I wasn’t well enough to work full time I knew I needed something to do with my days and so began to volunteer with the new charity for immune deficient patients Primary Immunodeficiency UK (PID UK). I was fulfilling my wish of doing more for those patients in our community and keeping busy at the same time.

Seven months after I started volunteering and assisting Dr Susan Walsh with establishing PID UK by writing copy for the website and creating the social media accounts, I was offered a position as a marketing executive working for Genetic Disorders UK and PID UK.  I’m now in a job that I love, helping others like myself and at the end of every day I really feel that I’ve accomplished something great even if it’s just answering a patient’s query through Facebook.

In addition to my job, a friend and myself have also started the facebook group “UK PID Patients” where patients and their carers can get together to exchange stories and support each other. Seeing the way patients offer each other encouragement as they cope with their own problems and dilemmas is amazing.

Working towards something to feel better for

In keeping with not being able to sit around doing nothing I also try to set myself goals of what I’m going to achieve within the next six months, from something simple like speaking to a friend on the phone once a month, to feeling up to going to the theatre or attend a big family gathering, this way even when I’m not feeling well I have something to work towards feeling better for.

Being ill does suck at times

Having a chronic illness when growing, does quite honestly suck at times, especially when you can’t do everything your peers do, but the more you learn to accept the hand you’ve been dealt, the more you can enjoy your life.

Here are my top 7 tips for all PID patients

  1. Don’t push yourself – learn your limits of what you can and can’t achieve when not feeling your best so you don’t get to despondent by overreaching and not succeeding, having said that make sure you stretch yourself and don’t get stuck in a rut.
  2. Set yourself targets - no matter how small, that feeling of accomplishment when you achieve something will give you such a boost.
  3. Talk – talk to your friends, your family, online to other patients, whoever you choose to talk to, it will help you to not keep things bottled up.
  4. Keep your chin up – your doctors and nurses are working to keep you as well as possible.
  5. Always look on the bright side of life – this may seem difficult a lot of the time but if you manage it you will feel better.
  6. Have fun when you can – yes you may be feeling terrible a lot of the time but when you aren’t make sure you have fun and a laugh.
  7. Have some me time – take time out for you, whether it’s putting your favourite CD on and having a bubble bath or going for a stroll outdoors, make sure you spend time doing what you want to do'.

Posted October 2014