Parenting in pain and what it can’t take away.

JoelVsArthritis

In this guest blog @JoelVsArthritis gives his story of becoming a father with Juvenile Arthritis and the highs and lows experienced along the way. 

About me

My name is Joel Nelson and I have lived with arthritis most of my life with the onset of Juvenile Arthritis just before my 11th birthday.

In 2019, I created my blog, JoelvsArthritis.co.uk to share my experiences, raise awareness and to be an advocate for those with arthritis and other autoimmune conditions. I have since written for leading arthritis charities and other health organisations, specialising in pain, parenting and mental health.

Parenting in pain

Parenting with a chronic health condition is challenging, especially one that tends to fluctuate like autoimmune disease where your body randomly and without warning attacks it’s own healthy tissue. One day you’re playing in the garden with your child, the next stuck in bed or on crutches wondering how on earth you are supposed to get them changed or up the stairs to bed.

The disease itself is an emotional rollercoaster, becoming a parent I suddenly wasn’t the only one riding the train. If I became sick on the ride, it impacted my wife and son too. Laying in bed on the bad days was no longer an option. It was a responsibility I found as claustrophobic and terrifying as I did an inspiration and my reason to go on.

It was liberating, but it also made me feel like I was in prison at the mercy of my disease. If I struggled, I could no longer rest, take sedating pain relief, afford to end up in the hospital for a week. It felt like after years of seeking assurances about the risk of transferring my disease before starting a family, that my son might as well have the same diagnosis given the impact my health has on him.

It was an upsetting period and something that I wasn’t fully prepared for. I still feel like I wasted the first precious year of my boy’s life worrying about how my health impacted him, rather than all the wonderful things that were taking place in front of me.

What it can’t take away

As I adjusted, I realised that I was focusing on the wrong things; the negative, as those of us who are forced to live a life of flare and remission often do. We spend 50% of our time mourning what we lost from our healthier days and 50% worrying about the future when, as a parent, we should be enjoying the present. Time goes so quickly, you blink, and your little ones are walking, talking, and you are no longer the most fascinating thing in the room. 

Somebody asked me recently what was my favourite thing about being a parent to date and I answered ‘being my son’s superhero’, and it’s true. Regardless of my physical health, I can do things that amaze him, from the straightforward disappearing act of peek-a-boo in his younger days, to showing him how to use a new object or toy as he approaches two years old. This is what pain can’t take away, ‘the good stuff’ as Robin Williams once said in one of my favourite films. I mean, who knew that somebody with such a pain problem, could instantly eradicate pain from a meltdown-inducing ‘boo-boo’ with a simple rub of the hand or kiss of the bump!? There’s an irony in that situation that makes me smile as much as it melts my heart every time.

Pain can tarnish my experiences and memories of parenting, but only if I let it. It can’t take away the love I have for my son, my right to be a parent, my commitment and effort. On the days when I’m physically limited, I’ve found other ways to spend time with him – I mean, all you need is a blanket and a few pillows, and suddenly daddy is comfortable but in the worlds most fantastic den! 

Parenting is hard, ask anyone without the complication of a long term health condition, and yes, there are times that I wish I could rest more like I used to - but I’d take having the best reason in the world to get out of bed each morning over a lie-in any day of the week!

Get support

There is lots of support out there for parents of disabled children, such as Scope’s Parents Connect but if like me, you are planning on starting a family or are already a parent with a disability, I highly recommend Enabled2Parent. They are a fantastic charity that specialises in parents with additional needs and the healthcare professionals who support them. Check them out.

Finally, as a dad with an ‘invisible illness’, much more needs to be done in this area to provide support for a group of people that can either often be overlooked or typically won’t willingly ask for help. It’s an area that I continue to campaign for change. 

Dads – there is support out there, and it’s ok to need a helping hand occasionally. Trying to change nappies whilst being on two sticks, trust me, I know! If you ever want to talk or suggest specific articles written as part of my campaigning, please feel free to email me via my website.

If you would like to read more of Joel’s story or work, visit his blog and website: joelvsarthritis.co.uk or follow him on social media @joelvsarthritis.

Tori_Scope

Really great post @JoelVsArthritis Thank you for sharing! 

JoelVsArthritis

Thank you for taking the time to read @Tori_Scope

Cher_Alumni

Thank you for telling us your story @JoelVsArthritis You speak authentically and honestly, it's very much appreciated.

I think there is a real gap in awareness around the experiences of fathers with chronic illness and I'm sure this will help our other members.  I hope you are doing well today  

buzzy

I have similar issues but Im seventy. Enjoyed your piece. keep it up
Cheers Ray

JoelVsArthritis

Thank you @Cher_Scope, you're welcome. It helps me as much as it helps others especially when every day is different with an autoimmune disease.

And thank you @buzzy appreciate you taking the time to read.

Ross_Alumni

Thank you for sharing @JoelVsArthritis, this was a lovely read.

buzzy

Thank you  Ross@Scope and Joel Vs Arthritis.
Have you any tips to conquer pain. I'm not able to walk more than about 5 metres at one time or 20 metres in about 20 minuets I'm grateful for anyones advice and wish everyone a satisfactory LOCKDOWN

Tori_Scope

You might like to check out our chronic pain category @buzzy. Chloe made a thread of managing pain during isolation, too, which you might like to read and get involved with.

Have you spoken to your doctor, or been referred to a pain clinic?