7 things to know about someone living with a chronic illness
I grew up as a healthy, active kid full of life. I was a little wild one with an unstoppable imagination who excelled in school and sports and challenged my parents and big brother to keep up with me. I dreamt fiercely and ‘no’ was not in my vocabulary.
My world got turned upside down, though, when I was 16. I started to get sick. Not sick with the flu or sick with a cold. It was an inexplicable kind of sick. I had severe widespread pain throughout my body, I couldn’t concentrate and lost all focus, and never had any energy, no matter how much I slept. I was in and out of doctor offices and received misdiagnosis after misdiagnosis.
Shortly after my 19th birthday, I tested positive for Lyme Disease. All those days I spent running around the woods as that overzealous kid I once was more than likely exposed me to a tick and I just didn’t know it.
Since then, I have battled Lyme and its after effects for almost 11 years. It’s been an interesting adventure full of challenged dreams, difficult days and a lot of question marks on my future. It has also taught me, though, resilience and the ability to turn obstacles into opportunities.
Living with a chronic illness is a full-time job. It affects every aspect of my life, every day. But, I can’t imagine what it’s like not to live with one anymore. It must be hard for my family and friends to understand what it’s like from my perspective. There’s a lot I could say, but here are a few things to maybe help bridge the gap:
- I’m more uncomfortable than I look.
Looks really can be deceiving. One of the biggest misconceptions I hear is, “Well, you don’t look sick.” Yes, there is some validity in this statement – I know I look like a healthy 20-something year old, so I won’t fault someone for saying it to me. It gets exhausting to hear this, though, because in reality I am just about always experiencing some degree of discomfort and I fight each day just to get through it. This is because on the inside, my body is under attack…on itself. It’s not a ‘what you see is what you get’ thing for people with a chronic illness, but I respect that this can be confusing.
- I understand that people don’t understand.
There are few people that I dive into the details of this with. Partially because it’s a sensitive issue for me and is hard to talk about, and partially because it is tricky to explain. Asking me how I feel (thank you for caring!) is quite possibly the definition of a loaded question. I always feel something, but it varies each day. It’s easier to play it off because you really can’t know, unless you know. And that’s okay. Here’s the thing: I don’t expect people to understand. In fact, I don’t want them to. Plus, it’s actually kind of cool to walk around with my own little secret.
- I am independent to a fault.
It’s in my nature to be independent, but living with chronic Lyme has encouraged me to become more detached than I would like to be. External pressure can create stress and stress triggers symptoms so I have learned to do really well on my own. I love my friends and family with my whole heart, but it’s hard to let people in when you have physical limits. Even when I’m with people, I can feel very alone, because, refer to #2. I know that this doesn’t define me, but it’s scary to think about being looked at differently.
- But sometimes I need a little help. Or a lot.
I have mastered the strategies I implement on most days to ignore mild symptoms and live my life the way I want to. Sometimes, though, when it gets bad, even getting out of bed in the morning equates to what I imagine it would be like to summit Mt. Everest. The joint and muscle pain can be debilitating; the headaches and fatigue can be incapacitating. On days like this, it can move mountains just to have someone there – in any way at all.
- I have to be careful with commitment.
There really are no guarantees with chronic illness. Every day is like playing a game of roulette. When I go to bed at night, I have no idea what I’m going to feel like when I wake up. This makes it tough to stick to plans. But the thought of letting someone down gives me anxiety and not following through with my word stresses me out, which catapults me back into the cycle of making myself more sick. Commitments can be a big source of tension for me and I am forced to be more conscious about making them than a lot of other people need to be.
- It can take me longer to do some things.
As #5 explains, each day is a gamble. Since I struggle with making plans, I can’t always put tight timelines on myself. I have to take breaks from things in order to focus on my health – not because I want to, but because I have to. Even college had to go on pause and I had to take a hiatus because of Lyme. I’m going to snag that coveted degree, it’s just taking me a little longer because I’m constantly jumping over obstacles. This goes for other goals I have, too, and there’s a lot of them. I refuse to settle because of this or for any other reason and am dedicated to pushing myself to always move forward – slowly but surely.
- I need time to recharge.
When it’s out of remission, Lyme rocks me. I get incredibly exhausted from the simplest things. I have to work downtime into my schedule each week – it is imperative for me to do things that revive my tenacity for life. I have to get outside, disconnect and feel a sense of freedom to re-center and focus back in.