Rheumatoid Arthritis and collateral damage

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I spent this morning taking my daughter to her psychologist.  She has developed an anxiety disorder around death and dying, and getting sick.  Gee, can’t imagine where THAT came from.

At first it was mild worry.  Then it exploded into her being afraid of everything.  She, like most people, gets rashes from time to time. But my daughter bursts into tears and thinks she is dying of measles.  Or that she has a severe allergy and will die of anaphalaxis (in the absence of any signs of anaphalaxis).  She is terrified of the chemicals in science class.  She worries that there are mice in the ceiling and that they carry diseases. Food has to be absolutely fresh, or she may get food poisoning. So many things…

She sees danger in every ordinary place.  She has anxiety attacks.  It is interfering with her schooling, her friendships, her ability to enjoy life.

So we’re seeing a psychologist.

For the first two sessions, I stayed in the room, because she was too anxious for me to leave.  This session, after discussing it with the psychologist, we agreed I should leave.  It’s clear to me that this anxiety is grounded in my illness. And my daughter will never be able to open up about her feelings with me sitting in the room. Even though, because she is so insecure and afraid, she wants me there for support.  Even though we are quite close, as mother and daughter.

At the end of the session, the psychologist briefed me on my daughters thought processes, and discussed some strategies on how to deal with it.

My psychologist said that on delving in to my daughter’s thoughts, it’s clear she’s taking my situation, my illness, and applying it to every situation in her life.

Whereas most kids have healthy parents, and know that they can rely on their parents, my daughter is having a very different experience.  She has watched me gradually get worse and worse.  She sees the pain that most people never get to see.  I do try to hide it from my kids, but sometimes that’s impossible.  They know if I am lying down, that it’s BAD.

She sees all the medications.  She watches me experience side effects.  She knows that mostly the medications don’t work for me. She has learnt that parents can break. And that doctors can’t always fix things.

Most kids see doctors are godlike and believe they can fix everything. They feel safe and secure in that knowledge.

My daughter has had that security ripped away by my illness.

So now she looks at every situation that way.  Because I went from a very fit, healthy woman who ran 5kms most days for fun, to someone who couldn’t get off the couch – overnight –  my daughter has no sense of security.  She thinks, not only that this can happen to her, but that this is likely to happen to her.

After a few months I improved, with medications.  But I have never been ‘well’ again. I have never even come close to being the person I was before I got sick.  My daughter knows this.  So she has learnt that nothing is safe, that nothing can be trusted.  That health and life can be ripped away at a moment’s notice.

It’s good for adults to be aware of this, and be grateful for their health.  It’s terrible for children to feel this way.

She applies these lessons to everything.  She doesn’t feel safe at school.  She told me she is performing the experiments in science class, but she admitted to her psychologist that she is not.  I have to call the school and ask them to force her to take part. She needs to learn and believe that every child in that class is safe, including her. That the world is generally safe if you make good decisions, you will generally be OK.

She makes good decisions. She is a rule follower.

She used to love carnival rides.  A few months ago we went to the Canberra Show.  She is now afraid to go on the rides, because they are not safe.  What if they break?  What if there is an accident?  I have to keep explaining to her, that while this is possible, it’s very unlikely.  She understands this. But she does not believe this.  She sits out the rides.

She loves the beach.  But she’s afraid of the ocean now.  People drown. There are big waves.  There are sharks.

She is no longer comfortable being home alone (not that I ever left her for very long).

She had an itchy lump her toe while at her father’s house (his custodial weekend) and called me in hysterics.  She begged me to come over and check it out.   It was, of course, nothing to worry about.

Her anxiety started slowly. And I admit, to begin with I didn’t take it seriously. But then when she started high school, an obviously very stressful time for any child, her anxieties exploded.

As did some other behaviours that I have always noticed, but never been concerned about. I was certainly aware though.

She has always been a little immature compared to her peers. She has always had difficulty making friends.  It’s more than shyness, it’s a real disconnect at times. She’s just not on the same page as them.

She’s very rigid in her behaviours, she follows the rules obsessively at school.  This causes her to get bullied and be called a ‘goody two shoes.’

She has trouble controlling her emotions.  Not in the same way that my son does.  My son has anger and rage issues. My daughter has fear and sadness issues.  She has meltdowns that leave her a sobbing mess and needing to be close to me.  I hug her and sit with her until the worst has passed.

She is very talented at art.  Her abilities are well above her age and this has been noted by several teachers.

This psychologist is the same psychologist that treated my son for many years, for his anxiety secondary to Asperger’s Syndrome.  Today she said that having had a few sessions with my daughter now, she sees certain traits.  The anxiety. The rigidity. The black and white thinking.

To tell the truth, I was relieved.  And I told her so. I have always seen them as well, but I felt that my daughter is not diagnosable. Let’s face it, it’s a spectrum, and we’re all on it somewhere.  While my son is well and truly on the Autism Spectrum, my daughter is borderline.  She has some traits.

My psychologist feels that she may meet the criteria for diagnosis as Asperger’s diagnosis, but she may fall just short.

This is in no way shocking to me.  I have always said that though I am a mother first, I am as much psychologist and therapist to my son.  It’s easier in many ways now that he is older, but I really should go and do a psychology degree.  I think I’ve already done most of the reading and have years of clinical practice!

I have seen these signs in my daughter, and a professional who specialises in diagnosing and treating children with Asperger’s agrees with me.   This is actually reassuring to me.

I have known many people with children on the spectrum.  Most treat it like a terrible, terrible thing.  I HATE that attitude.  Asperger’s is just a different way of thinking. That’s it. Not a wrong way of thinking.  Different.  Many Aspy’s are absolute geniuses.  Yes, parenting children on the spectrum is difficult. There are different rules.  But many think that Asperger’s is just naughty kids.

But there is a vast difference between an Aspy meltdown and a naughty brat throwing a tantrum. But you need to know the child and look at the situation critically.  With an Aspy meltdown, the child is out of control.  That’s the reason for the meltdown…they have lost control.  Aspys NEED control.  So when they feel out of control, their anxiety levels go through the roof.  They are NOT OK and they show it. Often loudly, in the middle of a public place.

BUT.  Watch closely.  An Aspy tantrum cannot be fixed with a toy or a lolly or a coke. The meltdown is often ostensibly about a child wanting something…say a can of coke.  With a normal child, if you get them a can of coke (I’m not saying you should do that, in fact you probably shouldn’t) but if you DO get them the can of coke, the tantrum ends.

That doesn’t work with an Aspy meltdown. You can give them whatever they are asking for. It won’t stop the tantrum.  Because the tantrum is not about wanting a can of coke.  The tantrum is because they are out of control.  Therefore the can of coke can’t fix it. They need to be taken out of the situation that is causing them stress. Usually just being in a crowded place is enough to tip the scales. They need to be physically and emotionally reassured.  Because Aspy kids often have sensory issues,  hugging them tight can give them physical and emotional reassurance.  The physical pressure will calm them.

I can’t tell you how many times I grabbed my ‘naughty’ child in a bear hug and calmed him.  Only to be abused by the Perfect Mother Brigade telling me that hugging him was rewarding him for bad behaviour.

He was neither naughty, nor being rewarded.  He was experiencing physical and mental distress that was out of his control.  You do not punish a child for a true meltdown.  That would be like punishing a diabetic child for having a hypo.

People are as wise in how to parent my children as they are in how to cure my rheumatoid arthritis.

For my son, there were clear benefits of getting a diagnosis.  His personality is very different to my daughter’s.  He needed the support at school, and I needed the school to give him support and accept he had special needs.  That alone was worth going through the diagnosis process.

For my daughter, the equation is different.  Her anxiety is the overriding symptom.  I feel that if she were to be labelled with any kind of disorder right now, it would have a negative effect.  She would feel that there was something irrevocably wrong with her, something that she could never recover from.  She would feel different and isolated and helpless.  It would feed into her current anxieties about not being normal, about being at risk, about getting sick. Additionally her traits and behaviours are much milder.  Far different to my son.

My psychologist agrees.  Particularly as it’s an expensive process to get an official diagnosis. And she may not quite meet the criteria for a full diagnosis, and therefore I wouldn’t receive any extra support.

It’s the stress of my illness that has pushed my daughter to breaking point, and this is why the behaviours are more obvious now.  She is desperately trying to retain control, but knows that she actually has none.  And because she knows she has no control, she is afraid. Very afraid.  It is similar to when someone with OCD is under stress.  They will engage in more OCD behaviours.  PMS is far worse when you are under stress.  Depression and anxiety are worse.

The bottom line is that she is collateral damage of my disease.

Something that’s rarely talked about.  I’ve always been aware of how my disease affects others.  My children, my husband, my friends.

But this is not something I could have changed, or controlled, so I don’t feel guilty. I do feel sad for my daughter and I wish I could have prevented all of this.  Of course I am making sure she gets as much help as she needs to cope with her feelings.  She will have all the support she needs.

But it brings home once again that inflammatory arthritis is so much more than some minor aches and pains every now and again.  The effects go far beyond even our own bodies.

My daughter will get through this.  I’m grateful  that I have help to support her, and we will retrain her brain to realise not everything in this world is out to get her.  That she is safe.  That she can be happy.

And she will be.

4 COMMENTS

  1. I know exactly how you feel and what you are going through. I have two boys aged 9 and 7 with asps and a 4 yr old being assessed. My 9 year old also has been diagnosed with an anxiety disorder directly caused my my ongoing illness first cancer and now the RA. I too can not change that, we just working through it. My advise is get her diagnosis, it will at least qualify you for the careers allowance for her, that will help pay her therapy bills, as I know you are also struggling money wise. Legally you are under no obligation to inform her school or teachers of her diagnosis, so no body needs to know. And for her self esteem, explain to her that it will help pay for her support, and that it will make no difference in any other ways. You need the money! They tell you to document on her worse week, not her best! It’s amazing how much we have in common, not just us but all RA sufferers, RA is like a stormy sea, every wave has an unmeasurable effect upons its environment, in this case our children. OMG to much Targine I am starting to sound like a poet! And a crap one at that!!! Sending good wished and thoughts your ways, wish we could grab a coffee together. Keep well.xxxxxx

    • I wish that too Sarah! Perhaps one day we will! It is amazing how much we have in common. And you do make a good case for getting a diagnosis…carers allowance would help. I will think it through. And discuss it again with my psychologist. Thanks much. All the best to you and your family…its so tough on the kids. And I love your poetry…perfect analogy!

  2. I have two kids on the spectrum – one aspie, one autistic and I also have another daughter who has terrible anxiety issues. Her fears are linked to social situations – catching the bus, going to the shops or speaking to people makes her so anxious she gets nose horrific bleeds, and the impact on her health (headaches, stress, depression) is huge. She refuses to get help, other than taking an antidepressant prescribed for her years ago.
    I’ve not commented before, but I follow you on facebook and read your blog. Thank you for taking the time to chronicle your journey, it really does help others to feel less isolated.

    • I feel for you and your kids. My son is the opposite to your daughter, while anti depressant medication definately helped his anxiety and depression and rage issues, he now refuses to take the meds. I can’t (and won’t) force him. So we struggle along as best we can. As do we all. Take care and thanks for commenting. So many of us dealing with similar things. You are in my thoughts. xx

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