Five Things I’ve learned since being diagnosed with a progressive lifelong illness, by Jamie Birch.

By Jamie Birch   who lives with psoriatic arthritis, a progressive lifelong illness

By Jamie Birch who lives with psoriatic arthritis, a progressive lifelong illness

1. You will grieve. You will grieve the life you had before, and the future life you had anticipated for yourself. You will navigate your way through many stages of grief - denial, anger, bargaining, depression, and finally acceptance. It will be tough, and some days will be really difficult. My mental health was very poor following my diagnosis, I was sad, angry and frightened. Navigating this new life was really daunting and my confidence was massively knocked. I felt like my identity had been taken from me and I had to adjust to my new life and self. 

2. You will feel like nobody has ever felt like you are feeling right now. But you aren’t alone. Someone has felt just like you are, and you will find things that you relate to so much you could have written them yourself. I found real value in connecting with others who had the same condition as me and were also in the same stage of life (with a young family). I actually became part of a WhatsApp group with other warriors and have connected with a number of people on Instagram. These individuals don’t quite realise how much they have helped me, but in my darkest hours they really did give me light. 

3. You need to be your own advocate. There is support out there, but you often need to push for it. When I realised something wasn’t right with my body, I took to the internet and did some research. Rheumatoid arthritis came up time and time again (I actually ended up being diagnosed with psoriatic arthritis, but the two are very similar). When I said this to a doctor, he rolled his eyes and told me I was too young. I persisted, and it wasn’t until I had a THIRD opinion that it was confirmed this was a possibility and I was referred to see a specialist where I was then diagnosed. Since then I have empowered myself by coming informed about my condition and treatments, and I questioned things that didn’t feel right. I asked for different forms of management, such as hydrotherapy, and made sure I was getting the best support that was available for me. 

4. Not everyone will understand, and you need to accept that. I suffer with an autoimmune disease called psoriatic arthritis, it’s very similar to rheumatoid arthritis. It differs to osteoarthritis as it is not caused by wear and tear, it’s caused by the immune system attacking the joints and causing inflammation. It’s progressive, can lead to individuals not being able to work and even sometimes being housebound, and the inflammation can also affect other parts of the body including the eyes and organs - which is a terrifying reality. There is nothing more frustrating than someone saying ‘oh yes I get a bit of that in my foot’ or ‘oh I get back pain sometimes too’. I am not belittling anyone’s issues, but the comparison used to bring me to tears, especially when people then didn’t understand when I explained the difference. 

5. You will adapt, your life will go on, and you will be okay. There will still be bad days, but you will cope. You will muddle through this new life and it will be okay. You will find new ways to do things and you will develop a new sense of ‘normal’. It will still be frightening, but you are so much stronger than you think. I really struggle still thinking about the future as so much is uncertain, but I’m also a lot more grateful for the present and enjoy the little things that perhaps I used to take for granted before. I used to feel that a day at home was a waste, but now I really enjoy a lazy morning watching shows in bed with my daughter, followed by a potter around the garden. I don’t give myself a hard time if that’s the most I can cope with that day; my daughter knows she is loved and that’s what matters. 

Jamie Birch

About Jamie Birch
Jamie is a mum of one living in Gloucestershire. She has always blogged openly and candidly about the highs and lows of life and motherhood. In early 2019 Jamie was diagnosed with psoriatic arthritis, an illness that is very debilitating at times. This year has seen her navigate through this new diagnosis and adjust to life managing it. She has written openly and honestly about this journey on her
blog and Instagram. She’s very excited to have been nominated for an award for her blog, and hopes it will be a great opportunity to raise awareness for arthritis. You can vote for her here.