You may recall I mentioned Lindsay Reid’s collection of poetry entitled ‘My dark guardians’ a few months back. As a fellow sufferer of ankylosing spondylitis, her work is something I can easily relate to. You can find my earlier post below.
I am delighted to say that I had an opportunity to pose a few questions to Lindsay about her book and living with AS. I hope you enjoy the following Q&A/interview as much as I did.
Tell us a little bit about yourself?
My name is Lindsay Reid; I’m thirty-five years old. I live in Newcastle Upon Tyne and work part-time for a local homelessness charity as well as writing part-time. I studied English Literature at Durham University, then went on to study Creative Writing at St Andrews and then Newcastle University, where I received my PhD in 2016. I love travelling and being in beautiful places, drinking cups of tea (preferably with friends), listening to and playing music, reading and cats. I am less fond of being in large crowds, confrontation and asking for help.
If you wouldn’t mind sharing, can you tell us a bit about your chronic illness?
I was diagnosed with Ankylosing Spondylitis in 2010, not long after my younger sister had been diagnosed with the same. From 2004 (when I was nineteen) I was limping and getting a lot of pain round my sacroiliac joints. I was very stiff in the mornings and found it hard to turn over in bed. I remember one morning when I woke up in too much pain to move and reach my painkillers. It was agonising.
I was finally referred to a specialist musculoskeletal physio. She felt that something didn’t look quite right with my x-ray and passed it on to a Rheumatologist; I’m so grateful that she did that! That was when I was diagnosed. I then had a couple of years of attempting various different anti-inflammatories which messed up my stomach but didn’t do much for my symptoms; I was put on adalimumab in 2012 and that was very helpful.
Since then, I have been learning to manage life with a chronic illness. Some of the hardest things I have found to manage have been the fatigue and the multiplicity of symptoms; it feels like you’ve just managed to get on top of one issue when something else decides to cause a problem! I’ve had significant problems with uveitis, and costochondritis. There’s also the fact that once you have one autoimmune condition, others will then jump on the bandwagon. I also deal with Sjogren’s and I have Crohn’s Disease which causes me significant issues. Even the adalimumab, which I’ve been very grateful for, has caused issues in terms of regular chest infections.
I went on the ‘Managing AS’ Course at the RNHRD in Bath, and found that really helpful; it really brought home to me the importance of exercise. So I now try and build exercise (and doing specific exercises) into my day. I do find it difficult that unless somebody has a chronic illness, it is very hard for them to imagine what it’s like, particularly if it is invisible. I’m often told how ‘well’ I look!
What or who inspires you to write?
For me, I’m not so sure it is a matter of inspiration. It’s more that I’ve never found a way not to write. From when I was very small, I found it the most helpful way to channel my thoughts – often I find it easier to write than I do to speak. I suppose with my poetry, I often write from a place of intense emotion; it helps me to process how I feel. But that’s not always the case – sometimes I am just struck by a particular experience, or scene, or even just by a few words – and I want to explore them further.
Your book, My Dark Guardians, is something I really related to as somebody with chronic illness. Did you write it for others to relate to, an outlet for yourself or something else?
This is a really difficult question to answer! I’m so glad that you related to it. I think I do hope that people relate to it – I suppose people with chronic illnesses are most likely to, but I think that the experience of pain and suffering is so universal that I hope that many people will find something in my poems to which they can relate. I think my poems are first of all written for me, just because I love the process of writing – putting my thoughts into words and clarifying my understanding about things – but often I then realise that they can be shared. I think there’s a process that a poem moves through – originally it is for the poet alone, but as they work on it, it becomes something more so that it separates from the poet and becomes a living entity in itself, belonging not just to the poet but to the readers as well. I’d like to think so, anyway.
Reading your poems, it struck me just how similar those with autoimmune disorders experiences are – the tests, diagnosis, frustrations. If there was one piece of advice you could give somebody newly diagnosed, what would it be?
I think my piece of advice would be ‘Be kind to yourself’. I think that piece of advice is relevent for a number of situations actually! – but when you have been newly diagnosed, you need to give yourself time to process, to talk the situation through with loved ones and doctors, to plan. There will be a lot of information thrown at you, and there will be a lot of feelings floating around. Don’t worry about what you ‘should’ and ‘shouldn’t’ be feeling – just allow yourself to feel whatever feelings you are having and be gentle with yourself.
I don’t know if this will be helpful or not, but I still remember what my sister (who is a doctor, who also has Ankylosing Spondylitis, and who has a very practical mind) said to me after I was diagnosed. She said ‘You’re no worse off today than you were yesterday. You still have the same symptoms – only now you have a name for them. So in many ways you’re better off than you were before because having a name for the symptoms means that now the doctors can help you.’
You’ve given a lot of yourself in this collection. I admire your courage and it certainly helps raise awareness. Was this the intention? Is this something that came naturally to you? What was that process like?
Thank you. I’ve been told before that I’m very honest (often in interviews – which I feel suggests I have possibly been too honest!) but I can’t really see any other way to be in my writing. I do often feel that as a quiet, reserved, introverted individual, I do hold back from people quite a lot but in my writing I want to be able to share my full experience of being human; I don’t see the point in hiding.
I’m aware that my poetry has quite a bittersweet feel to it – it’s not really cosy, bedside reading material – but that is my experience of life. I think that life is often uncomfortable, that it raises questions about why things happen the way they do, and that often it is our pain that connects us to other people. I suppose, as a Christian, I do believe that there is a purpose in pain so there is no point in covering it up; I found this quote recently that I really liked: ‘For Christians, there is an understanding that love and suffering are the two great mysteries that cannot be separated – so perhaps we endure the one in the knowledge that it is part of the other.’ (Michael Wakelin) I hope that both love and suffering are evident in my poetry.
There were some poems where I wondered if I had given too much; there is also the awareness that sometimes I am writing about other people, particularly members of my family. I tried to check with people that they didn’t mind if a poem in which they featured went into the book. I want to be cautious when it comes to other people, but for me, I’d rather err on the side of sharing too much than sharing too little. It is often the poems where I have shared the most which have moved other people the most.
Do you have any other books or publications planned? What’s next for you?
I don’t have any other books planned at present. I do hope to bring out another collection of poems at some point. However, I’m also working on a novel – watch this space!
Where can people find your book?
If people wanted to follow you on Social Media etc. where could they find you?
Finally, do you have a message or a mantra with regards to chronic illness for the readers of JoelvsArthritis that you’d like to share?
I feel like everything I say sounds trite. I want to say ‘If you’re going through hell, keep going’. I want to say ‘Take one day at a time – enjoy that day and don’t worry about tomorrow’. I want to reiterate ‘Be kind to yourself’. I want to tell people that they know their body best and that it is well worth learning how to advocate for what they need. I want to say that I know that this is really hard – this ongoing, invisible battle – but I do believe that there is hope.
Maybe I can share one of my favourite poems to end, which I have to admit I often take as my mantra:
‘If you will tell me why the fen
Appears impassable, I then
Will tell you why I think that I
Can get across it if I try.’
– Marianne Moore
My closing thoughts
What a great conversation that was. I certainly found Lindsay’s comments in this interview very insightful and for me personally, it was reassuring to hear the similarities. The chest infections, multiple autoimmune conditions and the challenge of living with them. Although you wouldn’t wish it on anyone, I draw some comfort in knowing it’s not just me dealing with the daily struggle. It’s also one of the reason’s I created this site. To raise awareness and help others in a similar position.
I also thought Lindsay’s ‘be kind to yourself’ message was a particularly strong one and if you take anything away from this piece, I’d suggest that’s one to hold onto.
I would like to thank Lindsay for participating in this. She is a regular follower of the blog and I hope we can work together again in future. I would encourage you to grab a copy of her book and have a read, especially if you have AS or similar autoimmune conditions. I hope you find it as interesting and useful as I did.
If you are a writer, artist, personality or creator living with an autoimmune disease and would like to share your story or achievement, please do get in touch. It’s important to tell the story of what is achievable with arthritis and similar conditions to inspire and give others hope through the pain.