Face #13: Caitlin

Caitlin, what’s your diagnosis?

hEDS – Hypermobile Ehlers Danlos Syndrome

How old were you when you started showing symptoms?

Two years old / younger.

And how old were you when you got your official diagnosis?

31 years old.

Are you able to work? If so, what do you do?

Yes, I work 23 hours a week as an administration officer/ business manager/ property manager/ financial manager/ PA – basically, I work for someone who owns many commercial and residential properties, as well as large farm operations and he sits on four national boards – so life is not dull. I also do volunteer work in administration/ invoicing for a Calisthenics team.

Did you have a career that got cut short? What was it?

No, but I often think of how much further I would get if I didn’t feel guilty for the time I take off/move around to suit medical appointments. I know I’m very capable at my job, but I hate that my body is not reliable.

Do you have a family of your own? Were you diagnosed before or after you had children?

We have two children – 9 and 11 years old. I was diagnosed after they were born, and I’m quite grateful for that fact. If I had known beforehand, I think it would have been a heart-wrenching decision either way.

How many health professionals are on your team?

My physio & GP are my go-to for everyday things, but I also see other specialists on a need-to-see/ annual basis; Orthopaedic surgeons x 2 (hip & collarbone), specialist shoulder physio, cardiologist, breast specialist (potentially not EDS related), GI specialist, dentist, optometrist.

Which of those health professionals is your “go-to” person when you have questions, or things are going pear-shaped?

Physio for musculoskeletal, GP for other issues, although they are helpful, I often go to them with a request for a referral to a specialist (that I have already researched), as they don’t have extensive knowledge of EDS and related issues, but they do listen.

What’s the most problematic symptom of your hypermobility condition?

Currently, it is my hip – instability, labral tear, past teres tear which could have happened again? Fatigue/ energy levels too.

Have you had bad experiences with ignorant health professionals? Can you tell us about one of those experiences?

So many!! I think the one that wasn’t the worst but still stands out, was the first after discovering what hEDS was. I had Dr-googled myself and gone to my GP with a double appointment and a whole lot of information. She agreed with me about the diagnosis and sent me to a rheumatologist to confirm. The rheumatologist looked at and contorted my body for less than 5 minutes, confirmed I had hypermobility EDS and told me I should take Panadol on a regular basis. That was my introduction to the EDS world – Panadol and a $280 bill for a 5-minute session with no information or direction. Even someone with a head cold gets more direction than that!

What’s the one thing you want the world to know about hypermobility?

The extent of the different systems it affects. It’s a hard one for people to grasp that it’s not just mobility or one organ that is struggling, it’s often a combination of many things all happening at once, and that can also have a kick on effect on the rest of your body.

Why is getting the message out about hypermobility so crucial?

Knowledge leads to understanding; understanding leads to compassion, compassion saves lives.

I’m not just talking about actual lives (especially since the majority of hypermobility disorders are non-fatal) but the quality of life. More understanding and less having to fight for that understanding/compassion from the health system as well as the general public would mean more energy to spend towards living life and managing the best way we know how.

Are there/have there been any plus sides/benefits to having your hypermobility condition?

Gratefulness – so much to be grateful for. I also think it makes me less judgemental – no one knows what everyone else has to deal with, and EVERYONE has hurdles to jump.

Also (a cheeky one that I shouldn’t do), handing food back to the kids in the back of the car – easy peasy, even if they are directly behind me.

Any other burning thoughts you want to add?

I wish there were a Centre where the visiting practitioners were very knowledgeable about EDS/ hypermobility and studying doctors could do rotations there. Newly diagnosed people could be given direction right from the start, even in the form of a referral to the Centre. Massive pipeline dream, but I want less of a fight for my children and my potential grandchildren.