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Mexico, Guatemala and Epilepsy

Updated: Aug 15, 2023

My first big trip of 2023 was the Mayan Trail with G Adventures. It was a mix of experiences, some wonderful and some horrendous – welcome to my world of travelling with epilepsy!

Prior to leaving, I informed G Adventures about my medical conditions and my epilepsy nurse sent a permission letter stating that I was safe to travel and could do any activities as long as I had company. The tour guide seemed very relaxed and accommodating at first and reassured me that I could partake in all activities if I felt able to. There were only 5 of us in the tour group, which was a nice number.

The tour began in the trendy coastal city of Playa del Carmen, then on to vibrant and historical Merida. From there, we visited the ancient Mayan ruins of Uxmal and Chichén Itzá. A highlight for me was swimming in cenotes – these sinkholes are absolutely beautiful and the water is crystal clear. And a howler monkey peed on me, which is meant to bring good luck! We then travelled to San Cristóbal de las Casas, a charming old town surrounded by lush green hills. Finally, we ended in Guatemala.

All the while, the ED voice was making itself known and I really struggled with all the food around me. I cried one evening when dinner was served and had to fight to resist taking laxatives. On the fifth day, I had an epileptic seizure. I think it was triggered by the stress of being inactive after an 8-hour coach drive. The tour guide told me I had woken after 3 minutes and I felt absolutely fine once I had recovered. I did not join for the evening meal that day, as I didn’t feel up to it. Self-care is so important and it’s totally fine to say no and have a quiet night to yourself when you need to.

The following morning, the tour guide asked if we could have a discussion. She sat me down and told me I was relying too much on other people to be responsible for me and not taking care of myself. For example, following others so that I don’t get lost (due to my brain injury) and asking about ingredients at mealtimes (due to my eating disorder). She also mentioned how I always go to the toilet after meals “probably to vomit” which was not true. I felt very judged. Then, despite seeming to be accepting of my epilepsy at the start of the trip, she said that the other members of the group “did not come on holiday to see an epileptic fit”, I should not be taking part in any activities, and shouldn’t come on these tours at all unless I was with people willing to wait for me while I recovered. Apparently, my fellow travellers were now scared to hang around with me. She angrily told me she was up until 2.30am completing the report on my seizure. She also accused me of being dishonest as I’d said that I usually have fits every 5-6 weeks and didn’t expect to have one during this trip, but epilepsy is unpredictable. I was made to feel extremely guilty and ashamed.

The tour guide raised her voice to me several times. One of the most concerning things is that she had originally told me I was unconscious for 3 minutes during the seizure, but now she was telling me that it was 1 hour, my lips had gone blue and my face was grey. I was shocked as this has never happened before in all the 27 years I have had epilepsy! My doctor’s letter stated that I only need to be admitted to hospital if a seizure lasts longer than 5 minutes, so even if I had been unconscious for 1 hour, she should have called an ambulance. I checked with other tour members, and they confirmed it had only been 3 minutes and were also quite shocked at her comments. I have since discussed it with my epilepsy nurse, who found the tour guide’s description quite amusing as none of it is consistent with an epileptic seizure. She was clearly fabricating her own version of events.

For the remainder of the holiday, I avoided the rest of group as I didn’t want to be told I was ruining anyone’s holiday again. I felt very isolated, neglected and anxious. Had I found an early flight, I would have flown home straight away, but I had to wait it out. The stress of the situation triggered another seizure when I was walking alone in Antigua. I was found in the streets by a fire officer. I recovered fine and got safely back to the hotel, only for the tour guide to give me another lecture about how I should not be doing these things and had made others responsible for me. She described me as ‘different’. I would like to point out that epilepsy is a disability under the Disability Discrimination Act, and this means it is illegal to treat a person with epilepsy as different because of their condition. I was very angry and upset.

I feel I was discriminated against, not only for my epilepsy but also for my eating disorder. I lost faith in tour companies and the whole experience was detrimental to my confidence and willingness to travel. I have since cancelled holidays to Nepal and Africa with G Adventures, as I don’t want this to happen again and I will not give them any more of my money after the way I was treated. I even went as far as looking into hypnotherapy to try and move my interests away from travel to something else! I dread not being able to explore the world. If you follow my blogs, you will know how I live with the effects of trauma and that travelling is one of the healing things that brings me joy, purpose and reward. How can I give it up?

My experience has made me all the more determined to campaign for epilepsy and our rights. Once I got home, I contacted several epilepsy charities to discuss how we can raise awareness of the condition. People need to learn more about seizures, know how to react to a major one and not to overreact when it’s a mild one. Most importantly, we all need to trust that a person with epilepsy knows their own limits and let them stay in control. No one with epilepsy or any other disability should never be discriminated against. I want to fight for all those with disabilities and help give them the confidence to travel and do all the things they want to do. We all have the right to enjoy the wonders of this world and should not be discouraged from adventure, exploration and freedom.

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