A story of strength
Posting date:11/10/2020 11:29 AM
Throughout October, as part of National Inclusion Week and SNC-Lavalin’s first-ever global ED&I month, we’re publishing four interviews with colleagues who are living with a hidden condition to help shine a light on their experiences and what we can all do to support them.
In this bonus interview, we’ve spoken to Catia Lopes, who is a senior personal assistant within our Transportation business. Catia was diagnosed with hypermobile EDS (Ehlers-Danlos Syndrome) in 2012, an inherited connective tissue disorder caused by a defect in a protein that we all know as collagen. Collagen in a simpler term is the glue for joints and muscles, and if the body doesn’t produce enough of it, it can cause a lot of health issues such as chronic musculoskeletal pain, extra elasticity, smooth skin and easy bruising.
In our conversation below, Catia talks about how she copes with constantly being in pain as a result of her condition and why travelling to Jordan was one of her happiest moments.
Catia, could you tell us how you were you diagnosed with your hidden condition?
I was officially diagnosed in 2012, but I started developing symptoms in 2009. I was always athletic, had a great life and could do everything until I had a knee surgery, followed by a disc prolapse and removal. I couldn’t walk, put on a lot of weight and couldn’t exercise, so the only way to lose the weight was a gastric sleeve. In total, I had four surgeries and a lot of treatments, especially for the pain.
Although hypermobility is considered a genetic condition, which one or both parents can carry, the genetic cause is unknown as the “faulty” gene hasn’t been identified. The treatment and management are both focused on preventing serious complications and relieving symptoms.
This is a rare condition, but more common than people think. There are a lot of EDS people that are not diagnosed and unfortunately, most of the time, by the time they have a full diagnosis, it’s too late and they’re already in a wheelchair or have a lot of unresolved health issues.
How is your personal and professional life affected by this?
The best way to describe living with this condition is that nothing can be taken for granted and every day is a “surprise”. It’s a very tricky condition, because I feel like a baby a lot of the time. I have to carry a lot of things such as painkillers, patches and blankets just to get ready to go out. Other times, I have to cancel plans last minute because I might have severe pain due to the weather being too humid.
To summarise, I’m in pain 24/7. After 11 years of suffering with this condition, my pain threshold is very high, but I do have to joke about everything as it’s my only way to cope. I had to go through the grieving process of losing my health, and now it’s just part of my daily life. It isn’t easy to cancel plans last minute, open jars or simply dry my hair, but at the same time I’ve learnt a lot about my body and what I can or cannot do.
I try to stay positive, but the truth is that when you’ve had four surgeries and have pain due to an invisible condition, it can be mentally exhausting. But even if it takes me longer to do a chore, I’ll still do it at a slower pace or on another day.
Are there challenges you’ve noticed in the workplace which you have had to adjust to as a result of your condition?
Yes, quite a few. I had to do the DSE assessment (which everyone in the company should do anyway) and it recommended that I have a back rest for my chair, a pedestal, a desk that rises, a padded mouse pad, a laptop riser and an extra monitor for home. Thankfully, my manager and co-workers have been amazing. They’re very understanding of my condition, and that makes me feel amazing. It’s really good to feel accepted, because my condition doesn’t define who I am.
Are there challenges you’ve noticed in the workplace that you’ve had to adjust to as a result of your condition?
COVID-19 has had a big impact, especially as I’ve been at home since March. I had the virus, then worked for one and a half months. After that, I had surgery, and I was off for another three months.
Although I have a flatmate, she has her own life. I have two cats that are amazing, and I video chat with a lot of people. I don’t have a family of my own, so I have to plan everything myself and look after myself the best I can. I just miss hugging my friends.
However, not having to commute to work frees up my time and I feel less tired than when I was travelling to the office. This is a plus, and I’ve really gotten used to it by now. I do miss the people and the conversations we used to have in person, but it’s a time for change so I am quite happy to be back to work even if it’s only virtual.
How do you like to spend your time outside of work, and does your condition affect how you approach or experience these things?
I love travelling, painting, singing, baking and anything that pushes my boundaries - I refuse to stop my life because of EDS.
I’ve done a lot of sleeping on the street for the homeless as well as countless charity events. I love helping as much as I can, and I want to show everyone that just because you’re different, it doesn’t mean you need to stop your life. All you need is a good support network, to know your body and to keep moving.
I had no idea I could travel alone or climb up and down a river canyon in Jordan until I did it. I was in shock and my knees were really swollen, but the happiness it gave me was well worth the pain.
So, all I can say is never give up, do what makes you happy and don’t take life for granted.
How can colleagues and the business support those who live with a similar condition?
I’ve had so much help at work, from everyone. On a bad day, I can call my mental health buddy or the Employee Assistance Programme. I’m also in regular contact with my manager, and I have the confidence to open up.
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