A Carer’s Story

Looking back is mentally hard, all those times she was passed off as over the top, a little princess, and nothing is wrong, and worst of all the implication she is a hypochondriac or it’s all in her head. 

The damage this does to a young person’s self esteem and happiness is awful.

But worse still is with so many doctors saying this, my husband and I doubted her as well, and doing that to a child is horrid.

From about 10 years old we were told to put her on the Fodmap diet as her stomach upsets were not settling. She had a bad gastric bug and it never settled after that. The diet is a very strict diet and every time we tried to reintroduce something pain flared, so back to the basics again. Having a young teen worrying about food was awful. I had constant worry I was going to give her something that would make her sick, she was constantly frustrated that we were restricting her diet and she didn’t believe that was it. I felt in a corner, whichever way I turned I couldn’t win, and I could see the mental damage it was doing to my lovely happy daughter and  my husband and I.

Violet had just turned 16, when her new GP sent us to see a rheumatologist to rule out EDS as a possibility of all her symptoms. And her hunch was right, he diagnosed hEDS. 

I was partly elated to have someone believe in her, he looked her in the eye and said “I get it, you are in pain and it is definitely not in your head. I can help.”  I thought great, he is going to help and she will come right. But I was also scared, what is this thing and what does it mean? 

He also diagnosed that her POTs (that the hospital had just said take some salt) was out of control. And that is when the roller coaster of medications started. It took over a year and more consultations with heart specialists and pain specialist and the rheumatologist, before we are now nearly settled with the right medications for now – it is often changing, but that is the body constantly changing and evolving as seems to be the norm with EDS and the co-morbidities.

In the first month following the diagnoses I was in a fog as I came to terms with the years of juggling seemingly unrelated conditions and that the endless doctors may be over. The various issues started at 6 years old, it had taken 10 years to finally get to an answer! I was exhausted, happy and sad.

Sadly I now realise a diagnosis is good, but that is just the start of our journey. My daughter needs to understand her body and find a new way to live her life. And we all need to understand all we can about EDS so we can help her in whatever way we can.

In that first appointment we learnt she is not to do any hard contact sports, she had just given up Judo a year before as she was too sore to continue the sport she loved. But after 5 years she had done a lot of damage to many if not all her joints. 

We had been through the hospital pain team who diagnosed Nerve Sensitisation Syndrome, chronic pain, chronic fatigue and POTs. There was no rheumatologist in that team, even though she complained of joint and all over pain.

They didn’t find the hEDS which was possibly the main underlying reason for all the conditions.

I have been trying to coordinate the various doctors for years to find the answer, I realise now the best thing was to find a GP who could help that co-ordination. Now I find we need that again with the professionals to co-ordinate her care.

We have tried prolotherapy to stop the pain and stop joint subluxations, but after quite a few injections it did not seem enough to stop this for her. So we realised we needed further help and have been to Jacquelyn at Mangawhai Osteopathy where she has helped ease some of the overall pain, apparently the muscles spasm and then pull on the joints, so add to the pain.

Jacquelyn has a plan, and one day a week is osteo treatment to help ease the pain, then one day a week is movement exercises to help Violet feel and understand the best way to move and not over stretch her muscles and joints. This is only part one of the plan.

Violet has organised herself, that when she and the surf are good, she is learning to surf, it is wonderful for her to have something to make her feel good about life and moving forward, this is something she wanted. She is very tired after but is looking very happy about it which is so nice to see. We have been trying different ways of taping to support her joints to stop further injuries.

Violet also organised to volunteer at a local cat rescue, the love of her life is her cat and so this seemed like a good fit to give her something to aim for each week and that she would enjoy. I am so proud of her that she organised all this herself, and she is happy as she’s helping others and gets to give lots of lonely cats lots of love and affection.

I am seeing this as the start of Violet’s rehabilitation to a life she wants. She has had to pull out of school and the sport of Judo she loved. But she is rebuilding to a new life starting small and achieving well with Osteo, movement therapy, surfing, and cat volunteering. I now have hope for a better future where she finds a different plan for her life, with what she wants to do and achieve.

For now I am trying to also find my new life plan, how I can be there and be supportive when she needs me, but also to allow her the space to grow, as like any 17 year old she wants and needs to be independent, and in the last few years she hasn’t been able to get that. I need to learn how to back away, and that is hard, as like any parent you want to help and not let them get hurt. But I see it as I am lucky as she is a determined wonderful young lady and she is gently but firmly taking the reins.

We are now starting to reach out to find support and a sense of community with other EDS sufferers and their families, as we see this is part of what we both need for moving forward and feeling better.

This story was sent to us by a carer who wishes to remain anonymous and all names contained within have been changed to protect the people who have lived this journey. The picture used for this story is a stock photo and not the actual person who wrote and shared this story with us.