Tuesday, 20 May 2014

Parenting when you have a chronic illness

May is Arthritis awareness month in Australia. It's also MS, Lupus, Fibromyalgia and a host of other auto-immune diseases awareness month. Personally, I think it's reached a point where we have so many coloured ribbons, wrist bands and pins that most people aren't really registering any particular ones unless there is a personal connection, so I'm not sure just how much actual awareness there is of these different days, months, or years any more. Certainly, in Australia, auto immune arthritis - a major and debilitating arthritis that comes hand in hand with Rheumatoid Arthritis (NOT the kind your granny has...that's osteo-arthritis) is not well understood. Our TV commercials are flooded with ads for the latest miracle 'cures' for arthritis. Now and again, I get a text message or call from some kind and well meaning friend or family member to watch A Current Affair or some like programme, because some research about a new 'cure' is being aired. The current madness is the proliferation of websites and Facebook pages that tout the latest miracle diet that will cure it...

There is NO cure for Rheumatoid Arthritis. At this point in time, a diagnosis of RA means you have it for life.

I have RA. I was diagnosed about a year or so after No. 2 was born. I had gone back to work when he was 6 months old, as a chef in a large day care centre (a job I took just before I discovered I was pregnant because I was burning out fast in my previous chef job). I had a chorus contract with the local opera company for an opera being performed in a big arts festival, so the schedule was very heavy. I was still breast feeding, and this child didn't have even the remotest interest in solid foods. When I started to struggle, feeling very ill and achey, having difficulties with nappy pins, suddenly finding that the large knife I thought I'd firmly grasped had flown across the work kitchen, and a few dropped trays of food later, I headed to the doctor, feeling as if maybe it was more than just being a mother of a nursing baby trying to manage a household, an older child and two jobs... My GP fed me the only anti-inflammatory drugs and pain killers I could safely take while breastfeeding, and gave me a referral to a rheumatologist. Things got a little bit complicated and drawn out after that because I've never shown a positive rheumatoid factor - a marker in blood tests that is used to determine a diagnosis. Anyway, long story short, he diagnosed me with sero-neg RA, and that job came to an end as it was aggravating the situation. I had to wean No. 2 - a torturous experience, as neither of us was ready for that - so I could start some more serious drugs, and a new life stretched out ahead of me. 

At the time, it looked forbiddingly bleak. My then husband didn't handle it all that well. Illness wasn't one of his 'things'. I got very sick from the first drugs they tried. The strength of the NSAIDs (non-steroidal anti-inflammatory drugs) was steadily increased until they, in conjunction with some heavy duty prescription pain killers, started to give some relief. Then the rheumatologist wanted to start me on Methotrexate (MXT) or gold injections - the two bigger drugs of that era. I read through the potential side effects - long and short term - and was horrified. MXT is a chemo drug, used to fight some types of cancer - used in smaller doses for RA. I refused to take it. He agreed, reluctantly, saying there was no point prescribing something I really didn't want to take, and also, pain aside, there wasn't enough happening in my blood tests to warrant it medically. Things stabilised more or less. I had a huge full body flare that put me bed for six weeks when No. 2 was nearly 2. My mother and aunt arrived to manage the house so No. 2's father could manage his shift work job. Physically, I was kind of managing. Emotionally, not so well, and eventually had a breakdown. That was the last straw for my marriage, which crumbled at that point, so by the time No. 2 was 4, I was on my own with him and No.1, who was not quite 11. 

Very fortunately, my RA was quite slow moving. Over the next eighteen years, it got worse, but very, very slowly. I had ups and downs, flares, losses, pain, constant use of NSAIDs and increasing use of analgesia. But I was so scared of the side effects of the stronger drugs, I put myself into GP care so I wouldn't have to argue with the specialist all the time.

However, it was bad enough for parenting to become a whole new ball game. No.1 could remember me pre-RA, and struggled initially to deal with a mother who couldn't always run around with him as much as I had. I got a lot of, "But you're ALWAYS tired now...", which was hard to hear. I was. But I couldn't do much about it. Pain is exhausting. No. 2 knew no different. He was a bigger, heavier baby than No.1, so from the get go, picking him up and carrying him around was harder. He had to learn from a very early age, to get himself places - and he did too, rolling all over the floor from about 7 months. He crawled early, and was walking much earlier than No.1. And walking much MORE than No.1 did, because it wasn't a simple case of picking him up and carrying him if he got tired and we weren't using the stroller - he HAD to keep walking. I made games of picking up in their bedrooms, so that they learned to do it in a fun way. I had them bringing their own clothes to the laundry basket. I put chairs in the kitchen so they could reach the sink and learn to do their own dishes. We still did lots of play things together - one memory both have is the wonderful tents we made with sheets and the dining table, full of cushions and rugs, where we could lay and read stories, and they could play out all sorts of fantasies and keep themselves occupied when it was hard for me to get down there. 

I lot of people I know through forums online, and groups on Facebook, who have younger children still at home worry so much about what their illness will do to their kids. How much they might miss out or lose by having a sick parent. What they don't have to miss out on - which many kids do these days - is TIME with us. A lot of us are at home. These diseases can make it very difficult to hold down full time jobs with regular hours, because the diseases themselves don't behave well enough to make keeping to a regular schedule that simple. Getting stuff done around the house WITH your kids, which is what I did - with the bait being a game or treat, or some TV (my kids didn't get a lot of TV so that was a HUGE treat) when the jobs were done - meant that there was always something to be done together at any time of the day, and we could usually find a way to make it fun. No. 2 learned to count handing me pegs when we hung the washing out. He learned colours matching up socks when we brought it in to put away. He learned lots of maths learning to cook. I have a version of my muffin recipe written out in big print and simplified for him to make from the time he insisted on doing it "all by myself" - he was five. No.1 could put a whole meal on the table by himself by the time he was 12. They both learned patience, and having to deal with things being cancelled sometimes because I wasn't well enough. No.1 would put on hugely entertaining performances for me at the park when we went, because he felt, I think, that he had to make up for me not being on the slippery dip with him - a few falls and subsequent injuries clued me in very quickly about the ramifications of injuries to a systemically arthritic body.

These days, at 29 and almost 23, they are very self sufficient young men, who are capable of running their own households very well. They can shop and cook, clean, wash, do basic repairs on clothes, and No.1 irons a shirt better than anyone I know (a little help from being a RAAF cadet there...!). They have very strongly empathetic personalities. They 'get' it, when someone is ill. I don't see any scarring in them that I could lay at the feet of my RA. Other things perhaps - No.1 declares that I scarred him for life making him eat mushrooms as a small child...but you know what, I'm sure a spot of therapy could fix that! 

Compared to a lot of the young people I see around me today who have had far more done for them than my two did, they appear to me to be much better adjusted and prepared for real life. I'm not alone in seeing this as a phenomena - it's not just my skewed view as their mother. Hunting around online - since there's a dearth of actual press articles on the topic, which is what I usually use as a springboard for these posts - I found an Australian parenting site that had an excellent page on this very topic. You can read what that has to say HERE. It's specific to 'disability' but it holds true for people with chronic illness, as the nature of these diseases can result in considerable disability, while not being injury related as the 'read my story' example is.

Unfortunately for me, after some years of what I think must have been some kind of spontaneous remission, my RA is back with a vengeance. I hate to think how I'd have coped when the boys were little if it had been as severe as it is now. I'm on the 'grown-up' drugs now - I have no choice. It was that, or give up on walking. What I do know though, is that I wouldn't have done anything with them any differently. I'd have needed, even more than I did then, for them to be fully participating members of the household at whatever level they could manage at different ages. That's so for any sole parent, and it's certainly so when that parent has a disability or a chronic illness, and it still stands if there's a supportive partner there. Children are remarkably adaptable creatures. Particularly when they're young. They are incredibly accepting. They also LOVE being given 'grown up' jobs. 

One of my very favourite stories (which I may have shared on this blog before, I can't remember) about No. 2 was the time he insisted he could do ALL a load of washing - from beginning to end - by himself. He got it all sorted, he got it loaded, got the soap in, got it running and then choofed off to do something else while the machine went through the cycle. When it finished, he put his small chair up against the machine to get it all out and into the basket. Hearing a funny noise, I went to peep, and he was almost upside down in the tub, fishing out the little things from the bottom with a pair of tongs from the kitchen because he couldn't reach the bottom of the machine - entirely his idea. He did ask for help to carry the basket out to the line, and then dismissed me again, before dragging one of the outdoor setting benches underneath the line so he could reach up to peg things on. Up and down he stepped until it was all hanging. And again, when he brought it all back in later - neatly folded into the basket to save on ironing... He was 6. And walked SO tall the rest of that day because of what he'd achieved. So, had my RA been this bad back then, I think the three of us would have been just fine.

Don't ever underestimate your children and what they're old enough or big enough to do. They'll surprise you every day. And they'll teach you something every day. And they'll learn things every day that they'll take into their own lives, and possibly even thank you for the opportunity you gave them. Mine did.

For readers wanting a really good blog that is RA based - and has oodles about the day to day issues of living with the disease, including parenting, I recommend Arthritic Chick.


  1. I loved this post, Karen.

    1. Thanks Rachel :-) It's been brewing a while...

  2. Rachel has introduced me to your blog and this post in particular. I suffer MCTD which is very 'lupey' and a single parent of 3. I wonder whether I might share a link (or more) on my blog to direct my readers to your posts. Like your situation, my children have learned to do things a lot earlier than they probably would have had I been well. I used to worry about them 'missing out on childhood' but reconciled it by realising that they are going to need these skills sooner or later...we'll just learn them sooner and it has been a blessing. My children are also very well adjusted and succeeding in their studies. They have worked out the important priorities in life.

    1. Hi Jodie - welcome to Dragon Mother. Good on you for managing with your illness and kids - it's bloody tough sometimes, nu? If you've read any of the other posts when I've banged on about my despair over much of the current generation of kids, then you'll get it when I say that the kids of parents with disabilities and chronic illness are, quite possibly, the fortunate ones - learning life lessons they need to learn, albeit earlier than they might have otherwise, as you say...
      Of course - by all means, reference my blog on yours. I'd be honoured. Thank you!

    2. Hi Kaz, Your link is now on my Resource pages and I thank you for coming over to have a look and saying hi in the comments. People who work with "young carers" often state how these young people have such mature attitudes and how amazing they are. Children are very adaptable and intelligent - traits important to success in life - but I have had to fight as a parent for the children to be given the same chances as other children just to "be kids" and not be forced into the role of full-time unpaid carers and having that interfering with their studies or future ambitions. You would be amazed at how many times agencies that are supposed to provide assistance to me, have tried to deny that assistance on the premise that the children should be doing those tasks (that really need the responsibility of an adult!) One of my current 'soap boxes' is to advocate for and raise awareness of the special needs when one has a disability or chronic illness and is trying to raise a family at the same time.

    3. Hi again Jodie! Thank you! You're right, of course, our children shouldn't be seen by the system as 'carers' at all. They're our children...and as such, need to be allowed to be children. That kids like yours, mine and those of other people with chronic illnesses learn the skills, understanding and compassion that they do is due to circumstances that none of us, I'm sure, would have wished on them (and that they certainly would wish otherwise!) - but in no way should their skills be seen by agencies as something to tap into instead of the agency looking to provide the care it was set up to offer. It's hard enough parenting these days, let alone as a sole parent, and it's just compounded by illness and the daily challenges that imposes on top of all the others. And it's all very well for staff at government and private agencies to establish criteria that they use to ascertain whether or not someone needs extra support - but those criteria start becoming so rigid...which is, partly, due to finding issues, I'm sure, but like you, over the years, I've had to fight for MY case to be seen as that...MINE. Not some generic case that does or doesn't match what they think it should look like. I wish you well in your current advocacy journey - it's an important one that is too often overlooked.

  3. This is beautiful. I too have often worried is my RA impacting on how I can or could have been as a parent but because my RA flared up immediately after giving birth to my wonderful little boy (now 7) he has not known any different. We get extra snuggle time. He loves helping out and if dad isn't home he loves to say he is the man of the house. There are times I would not have got through without my husband and son and I'm extremely grateful to the both of them.
    My son is a lot more understanding and empathetic to others with health issues then he may have been otherwise. To a point he has grown up quicker then he should have maybe but he is still a kid he still gets his being a kid time.
    We have decided not too have another child as I have been told my RA will come back worse after each birth and with other health conditions on top it's not worth it. But Connor is our baby (my prince) we have learnt to hold him close appreciate him and he never seems to question why I can't do all the things his friends parents can. I also have a brother with severe refractory epilepsy and Connor just loves his uncle Ben. I think it has provided us with a lot of life lessons.

    1. Don't forget, due to your RA, Connor will have a mum that's around more...a side benefit of not working any more... That's a bonus for him. And yes, they do grow up faster, but on the whole, given how much the current generation doesn't seem to be growing up, that's not a bad thing! Not to my way of thinking anyway...
      My youngest's middle name is Connor! :-)