Chronic illness and mental illness are two things that still have a major stigma attached to them, not just in church but in general life too. As someone who has suffered from both, I can honestly say it’s a tough path to walk and the support you get is what either paves that path and makes it smoother, or makes it feel filled with potholes.
I was diagnosed with Chronic Fatigue Syndrome (CFS) when I was 13. It’s commonly known as “yuppie flu”, a term which those of us, who suffer from it, find really derogatory. I’m not a ’90’s suit’ holding a brick sized mobile phone, feeling sorry for myself yet that’s what that term makes me think of.
CFS is actually really debilitating and limiting; in fact I’m lucky because I’m not bedridden as many are. It’s a truly tough line to walk though. To manage it; to make sure that I don’t crash. I go for booster neurobian shots every few weeks (they pack a punch and a sting to go with it). I train with a biokineticist, because left to my own devices, I either tire myself out too much or I don’t do enough exercise; if I push too much I’m drained for the rest of the day. If I don’t get enough sleep, my immune system dips and I get sick, so I stress about getting enough sleep.
It’s hard to explain what it feels like when it makes you ill. The best way to describe it is that it feels like a bad hangover but without having drunk anything. Headaches are a frequent part of my life whenever I get tired.
It’s okay though, I’ve lived with it for almost twenty years; I think I have a handle on it for the most part. What I don’t have a handle on is how others react to it or treat me because of it. The biggest problem is that people just don’t understand. I’m not tired. You know how you feel when you are totally burned out? That’s my normal functioning mode; that is my daily life and what I’m trying to manage.
The book and subsequent movie, Unbroken, about Louis Zamperini was written by Laura Hillenbrand. Laura suffers from CFS and she wrote the whole book from her bed. She inspired me to write more, and consider how I could make an income in ways that would work for me. You see, working a full-time job when you need a nap once or even twice a day is a bit problematic. It also presents you with a dilemma: are you forthcoming with potential employers about it? The couple of times I was honest and open about it, it was thrown in my face and used against me. This in turn made me try to hide it from most people.
In the beginning, I don’t think even my parents truly understood or knew how to deal with me. I didn’t know how to deal with my own moods from being tired. As I got older though, and learnt more about myself, more about the illness, and how to relate to others in regard to it, things got better. I’m extremely blessed because I have the most understanding and supportive parents anyone could ever wish for. Just knowing that they get it, makes me feel so much better.
My best friend and my fiancé are my other two strongest supports. I rarely have to explain myself to either of them because they just know. My best friend taught me things about myself, my “tells” when I’m tired, that I didn’t even realise myself. Knowing these helped me to manage my moods and know how to relate to people better when I’m tired. My fiancé is one of the biggest blessings in my life. I spent most of my years growing up thinking, “Who would ever want to be with someone who would never be able to contribute as much financially to a marriage?”. It never even stumped him; we’d just make it work. His confidence in me, the way he loves me and cares for me, gives me confidence in myself and us as a couple.
Now I tend to be straightforward with anyone I’m building a relationship with – friends, leaders, church family. I don’t want sympathy, or pity. What I want is awareness and understanding. I want to create awareness about CFS so that the stigma around chronic illness is lessened even just that tiny bit. If I can help everyone around me to understand and know how to support anyone they meet who has CFS or any other chronic or mental illness, then I’ve met my goal.