“Fibromyalgia is caused by an oversensitive nervous system, which makes everything come in extra hard, both physically and mentally. It feels like driving while all the lights on your dashboard are flashing. Speaking of driving — it's not an easy task for me, and I deliberately avoid appointments that would require me to drive too far. Talking on the phone is another challenge. Without facial expressions and body language, I find it harder to interpret language and try so hard to listen and understand that the message doesn't get through or I stumble over my words. Cooking isn't always easy either. At home, I try to provide as many backup plans as possible. For example, during good times, I make a large bowl of spaghetti sauce so that I can still provide fresh food on bad days. I've also arranged the house so that housework can be done intuitively, easily, and quickly. In that respect, my limitation may even be a bit of an asset! Many people don't understand the impact that autism and fibromyalgia have on my life. Sometimes I wish they could take a look behind the scenes. Because I'm always afraid that others will find me lazy and complacent. Or worse, that the disease is all in my head. The biggest challenge I face is on a professional level. Working is almost impossible during periods of intense pain, fatigue, and overstimulation. As a "but you don't look autistic at all!" person with autism, I am often overestimated. Adjustments that are essential for many people with autism or fibromyalgia are actually nice for everyone. And that makes employers less eager to provide those adjustments. So it's not surprising that only an estimated 15-20% of all adults with autism are working. Fibromyalgia is a diagnosis of exclusion, and there is little to see in blood, scans, or tests. I have never been on disability myself, but the control doctors are said to be terrible and suspicious. There is still so little known about the disease, and that leads to a lot of self-doubt. Who knows, maybe in the future they will find a magic pill to take away all the complaints. But until then, I will continue to make the best of it and hope that people gain more understanding of the impact that autism and fibromyalgia have on my life."

“The link between autism and fatigue is seriously underestimated. I know I'm not alone when I say I experience immense exhaustion. You could say I constantly feel like I'm jet-lagged. It's particularly tiring to have to function in a world that's not designed for me. I have to put in extra effort to do things that come naturally to others. Processing all the stimuli and information around me requires an enormous amount of energy. It makes me nervous and stressed, which only drain my energy further. To cope with this stress, I prepare for situations as much as possible and learn to manage my energy well. I focus on small things that make me happy and take breaks to recover from my exhaustion. But sometimes I even need a power nap or a full day of rest to recover. When you're constantly exhausted, everything is difficult. You can't function properly: fatigue is like the syrup that covers the buffet of life and makes everything hard. Sleep is also a challenge because my racing thoughts never stop, and I always get an energy boost in the evening, like many people with ADHD. I need extra rest and sleep to recover, but that's easier said than done.”

Follow Elise on Instagram.