“Mostly this has to do with people thinking that I’m feigning illness in order to shirk some task.”

In a bid to raise awareness on an under-reported health issue, IPF has started a special Invisible Illness series where we speak to young people about their experiences with invisible illnesses. 

This week, we speak to Colin Gorrie about his experience of living with Hypermobility Syndrome.

What is your invisible illness called?

My invisible illness is called Joint Hypermobility Syndrome, which may in fact be Ehlers-Danlos Syndrome, Hypermobility subtype. The exact diagnosis is still unsettled. I’ve been waiting for genetic testing for a number of years now to confirm a diagnosis of EDS, but the wait time for medical geneticists in Ontario, Canada is absurd.

One thing I’ve noticed is that a diagnosis of EDS seems to be treated more seriously than one of JHMS, but there are even researchers claiming that the two are identical. So, as is the case with a lot of these illnesses, the whole issue of what the illness actually is turns out to be not that simple.

What symptoms does it cause?

The symptoms are a lot simpler than the diagnosis. The problem has to do with the structure of the body’s collagen. Since collagen is found in many different systems, the symptoms show up in many different systems. The biggest one is in the joints, which are very loose with JHMS/EDS. This leads to frequent joint dislocations and fairly constant joint pain.

Other major symptoms include fatigue, lightheadedness, and sporadic allergic reactions. Sometimes the non-joint-related symptoms are parcelled out into other comorbid conditions like Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Disorder. The research hasn’t quite pieced together how these all interact, but they do tend to occur together in people with JHMS/EDS.

How does it personally affect your life?

The effect on my life has been far-reaching, although not as much as it is for some. For instance, I was able to pursue an education, and for many, the symptoms are so severe that getting an education is not an option.

I’ve been fortunate in that I can still work to a certain extent.

Over the past year, problems with the joints in my wrists have limited the time I can spend typing, or using a mouse or pen, significantly. Right now, any more than two hours of use and I risk injuring my wrists, and being able to do less over the next week. It’s difficult to get the amount of work done in the time that most employers would expect, so I’ve had to strike out on my own, and that’s always something of a precarious existence.

Before the specific problems with my wrists started, fatigue was the limiting factor. Sometimes it frustrates me to think of what I might accomplish if my body did not throw up obstacles, but I try not to focus on that. After all, my career may not have taken the path that I thought it might – but whose has, chronic illness or otherwise? A certain amount of adaptability helps, but so too does understanding from the people that you work with.

Outside of work, I have had to limit what I do, but I don’t want to give the impression that life is joyless as a result. I follow a strict diet that helps to control the allergic reactions, and I keep my athletic pursuits to ones that are appropriate to the activity level my body can handle.

I’ve found that keeping my body moving – in whatever fashion it can on any given day – is enormously helpful.

The trick, of course, is to know your limits.

This is difficult in any area of life, especially when all of your friends are exercising, working, eating, and generally living at a pace that’s appropriate to their health. It’s hard not to want to keep up.

Have you experienced any discrimination because your illness “can’t be seen”?

I hesitate to use the word “discrimination” to describe my experiences, but I have been treated poorly on occasion due to the fact that I appear fully physically well, and yet am not so. Mostly this has to do with people thinking that I’m feigning illness in order to shirk some task.

Occasionally I’ve experienced bullying from other men who have been seduced by the ideal of machismo: physical strength is not a hallmark of JHMS/EDS, and so I don’t measure up in their eyes.

What kind of care have you received and how has it affected you?

Unfortunately, there are few treatments for JHMS/EDS. The care on offer is mostly advice on how to manage life with such a condition. And the truth is that there is only so much the patient can do without the co-operation of their society.
For example, a doctor can advise a patient not to work through the pain, that this in fact worsens the situation in the long run. And yet, I venture that most patients will find themselves in positions where they are forced to injure themselves, and worsen their prospects of good health in the future, if they are to obtain any sort of income. There simply is not a structure set up for people of all ability levels to work and contribute, and in return gain an income and a semblance of normality in their lives. So there is much work to be done on that larger scale.
Nevertheless, there are often very valuable things that an individual patient can do.
For me, controlling allergic reactions through a specialised diet has given me a great improvement in quality of life. Similarly, physical and occupational therapy has helped me on numerous occasions. I wouldn’t be working as much as I am now without it. I would advise all patients to make use of all available resources, and not to think that they have heard every little bit of advice. I’m still learning useful things even after years of seeing specialists.

Do you think enough is being done in the health sector to cater for invisible illness?

The status of invisible illness in the health care system will differ from place to place, of course, so I can only speak to my experience, which has been exclusively in the province of Ontario.

We haven’t seen the incredible advocacy on behalf of patients with invisible illness here that has occurred in the UK. So the level of awareness on these matters isn’t very high, and you still get some bizarre resistance in medical quarters. For example, I’ve experienced the most frustrating treatment from some few medical practitioners who do not consider JHMS/EDS to be serious enough to warrant their concern. In these cases, what can a patient do other than hope for a new referral to a specialist with a better command of the literature? Fortunately, these great physicians do exist as well.

I’m hoping that the ratio of the informed doctors to the ones who don’t keep up with the literature continues to grow, and I think public advocacy will play a role in that.

Do you think there is enough media awareness about invisible illness?

Really, the media’s level of awareness of invisible illnesses extends about as far as the occasional article in a local newspaper about someone who’s been shuffled around the medical system without ever receiving any help – which seems to be an entirely typical experience. The fact that we keep seeing these stories, and that little seems to come of them, indicates to me that the movement to improve the situations of people with invisible illnesses hasn’t yet cohered into one that can effect change.

My hope is that we, in Canada, can learn from the efforts of advocates in the UK and start to bring these issues into the mainstream here as well.