C.G.

My whole life I have been living with an invisible chronic illness, but it wasn’t diagnosed until I was nine years old. I was diagnosed with Chronic cephalic and abdominal migraines. Since then it has been something I have had to deal with on a daily basis. I would say I have never felt one hundred percent healthy in my life, on a good day I feel about eighty-five percent. No day goes by where I don’t experience a symptom of my condition or a side effect from my medication. Living with a chronic illness impacts every aspect of my life: social, academic, and familial are the hardest to cope with. I have had to miss social events with my friends, but even worse with my family. I have missed Thanksgivings, birthdays, family reunions, school dances, activities with friends and so much more. When I was in middle school I had a flare-up with my condition: I was facing getting held back from school because I was receiving too many absences and I was struggling to keep up with school work. I had a home-health teacher come to my house every day to make sure I wouldn’t get held back. Since then I have been able to manage academics with the support of school administrations. I receive accommodations such as due date extensions, rescheduled tests, and excused absences. 

 The hardest part about living with an invisible illness is that I may look physically fine from the first appearance, but on the inside, I can be struggling immensely. Many people have misconceptions about my condition which leads to them not believing I am sick, or telling me that what I am doing to manage my symptoms are wrong and offer up their own pieces of advice. Another thing that I consider to be one of the hardest parts of my condition is the unknown. Not knowing whether tomorrow will be a good day with no symptoms or attack alternately having a bad day where my plans will be ruined or rescheduled. Honestly, I am still learning how to work through my illness. I feel like once I conquer how to handle one aspect of it something new will come up whether it be a new societal challenge or an actual symptom of my condition. I have come to peace with understanding my medical condition will be an ongoing challenge presenting itself in new and grueling ways. However, there is one thing that always gets me through, my family. I have been able to survive my experience through the support of my family and friends but also coming to peace with my illness. My mom was my biggest advocate: she was my voice when I was too young for people to listen to me, especially when it came to medical professionals. I would describe my best friends as people who have shown a tremendous amount of sympathy and understanding of my condition. They have played an important role in my life by treating me in a way that makes me feel normal and accepted. 

For social media, I felt like my condition isn’t just something to put in my caption or in my bio. I don’t want people to think I am looking for pity. Also, it is something somewhat personal that I don’t mind talking about in person, but I don’t feel the need to blast it over social media. I can’t speak for others who have a chronic illness, but if people aren’t posting about their situation it is most likely for the same reason: we aren’t looking for pity and we don’t want to blast the world with our own problems. Another reason why people don’t share this on social media is the fear of having to explain ourselves. All too often I am faced with the question, “why?”: “Why aren’t you at school today?”, “Why can’t you see?”, “Why can’t you eat that?”, “Why are you so quiet today?” and so on. It is challenging enough to explain to someone who is closed-minded in person let alone someone over social media. 

If I wanted to share this on social media I would want to do it in the form of a blog. I have talked to my family about it and they support the idea and me one hundred percent and it has been in the back of my head for a while now. The only thing is I don’t feel like I am in the place of my life where it would feel right to start. Although, I believe it would be beneficial for both me and others: on the one hand it could be therapeutic for me and also help other people with a similar diagnosis understand that they aren’t alone. I think the overall effect would be positive. Everyone wants to feel normal, accepted, and validated. Starting a blog could potentially help people going through what I am, and help then not feel alone, especially if they are also in college as well facing similar struggles as I do.

If you are living with a chronic illness, especially women, know you aren’t being dramatic, emotional or overreacting, contrary to many doctors’ opinions. You are your biggest advocate and it is important that you stand up for yourself. You are the only person who knows what you are experiencing, nobody else. Chronic illnesses aren’t just textbook cases, they are individualistic and doctors should treat it that way. I recently found a support group through Facebook and it has helped me feel validated in ways I have never felt before. I would recommend finding a support group whether it be online or in-person because even though you may have sympathetic people in your life there is something indescribable about sharing experiences with people who can be empathetic and beyond.