Being visible

Anyone who watched or heard about the wedding of Princess Eugenie will know that she had her dress designed to show off a scar from Scoliosis surgery that she had when she was 12.  It was very brave of her and unusual for the Royal family who usually keep health matters secret.  In fact it was hidden for a long time as she had the surgery in 2002 and not a word was mentioned in the press.  I loved the dress, but not sure I would have been so brave.  I don’t think she saw it as being brave, but a show of pride and what she has overcome.  Being royalty doesn’t mean they don’t have health issues.  This came after Prince Harry and Prince William had spoken out about struggles with mental health and bereavement during childhood.

I too was diagnosed with Scoliosis at 13.  I was having investigations for illness and the Scoliosis showed up on an X-ray of my chest.  A condition called Adolescent Idiopathic Scoliosis, where the spine curves.  It usually starts from the age of 10.  Princess Eugenie has a prominent curve which required surgery to prevent her back becoming deformed.

My curvature is S shaped, so in some respects it corrects itself, but I have uneven hips and shoulders and constant pain in my lower back and shoulders.  I don’t know how much of the pain is from the Scoliosis and how much is due to my ME/Fibromyalgia, but neither helps the other.  When I was able to be more active my back used to cease up and go into spasm due to the stress on the muscles.  I had to give up my nurse training due to the strain on my back.  Even now I have regular physiotherapy to release the tension in the muscles, again it is difficult to know which is the scoliosis and which the ME/FM.

Image from Complete Chropractic

At the age of 13 when I was diagnosed and following many more x-rays and hospital visits, I was fitted with a brace, from my armpits to mid hips.  It was a thick rigid plastic, very heavy and hot and fastened with straps.  It wore holes in my clothes and I developed a skin condition due to sweating underneath.  I had to wear the brace all the time I was up and about.  I was allowed to take it off to sleep.  It made eating very uncomfortable and also sitting for any length of time and all this when my body was undergoing changes of puberty.

An example from Researchgate

I was told that I wouldn’t benefit from surgery, which in 1984 was not very sophisticated and the spine was fused.  Current techniques allow the metal rods to lengthen as the child grows.

More information can be found at SAUK.

My Scoliosis is not really visible and I usually wear clothes that cover up the unevenness.  But why should it need to be visible or to have a scar to prove that it was real.  Most illnesses and conditions are invisible, but this also seems to mean that they have to be justified or that they are not as bad as something which requires surgery or causes an obvious deformity or visible altering of appearance.

Until Princess Eugenie showed her scar, I wonder how many people had even heard of Scoliosis?  Only those who have it or know of someone who has it I would imagine.  Is it a lesser condition as it is usually hidden?  I wore a very bulky and what I thought was an obvious brace, but as it was under my clothes I am sure people who didn’t know me, would not have know.  I had to buy clothes 2 to 3 sizes bigger, so to me it was significant and I hated it.  I wore the brace for nearly 3 years.  I was allowed to stop wearing it when x rays showed that I had stopped growing.  I don’t know if it stopped the curvature or if I would have been better having surgery.  I also don’t know if the curvature has changed over time, it could well get worse as I get older and my lack of mobility will work against me.

I remember when my nursing contract was terminated, they said I would be in a wheelchair by the time I was 30 if I carried on.  In fact I walked down the aisle to get married on my 30th birthday.  A year or 2 later I was using a wheelchair outside the house, mainly due the chronic fatigue, but also due to back pain and difficulty walking.  I may use the wheelchair, but my pain and fatigue are not visible and on the outside I look ok.  I will talk about invisible illness and disability in my next blog.

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