I’ve spent the last five years of my college experience struggling to make deadlines, writing many apology emails to my professors and only taking on the bare minimum amount of classes to make full time. It can be incredibly difficult when you add a part or full time job to your already challenging course load on top of a chronic illness.
Google defines a chronic illness as one that is long lasting in its effects or one that comes with time. For me, it’s been a life-long struggle of attempting to feel normal, and always hunting down that next diagnosis.
Being perpetually sick is a financial burden on families and can be emotionally exhausting for friends, not to mention our poor parents who have to watch their children suffer, unable to help.
For those of us with invisible illnesses, it can be difficult to even get people to believe you. I can’t tell you the countless times I’ve had doctors tell me I was fine, or family members who told me I have made it all up. I’ve spent so much time in hospitals I can literally recite the script. I can tell you exactly what tests they’ll run, what they’ll say to me, and how long I’ll probably wait after everything is done before being discharged (usually it’s thirty minutes to an hour).
There’s a difference between looking healthy and being healthy and most of the time, other people may have preconceived notions about what it means to be a healthy person.
The worst is when you have to cancel pre-made plans. Or, you can’t go out on the date you made weeks ago. Potential boyfriends just don’t understand why you don’t have the energy to get out of bed. Many in my life have confused laziness for the inability to perform simple actions, and most of the time I find myself collecting energy to perform a big task and spending my time outside of it in bed or inside the house.
I’ve even been fired from a job because they didn’t think I was a “good fit” for their environment. There’s not much this illness hasn’t taken from me (except for my life, but for many with chronic illnesses that’s not something they can say lightly).
My flare ups are few and far between these days, which is more than I can ask for, but when they do come they happen to occur at some of the most inopportune times. When I’m having a big party, when It’s a big sale at work, when there’s a family function I need to go to–I really can’t plan in advance for when my body decides to shut down. Sometimes I’m able to push through that physical pain and still operate as needed, but other times whatever is happening is so difficult I have to tap out and spend the day with ice cream and Netflix.
The only advice I can give is to work hard on finding a support team that fits your needs. Not everyone can afford the medical access it requires to support someone who is always sick but for those that can, the most important thing to do is to vet your medical team. Finding a doctor that believes in you and wants the best for you medically is essential to discovering a stable way of living. Don’t be afraid to try different doctors, to seek out that third or fourth opinion, and to view all of your options even if they’re unconventional.
For others that can’t afford such luxuries in today’s economy, the key thing is to find a group of friends or family that understand how to support you. Don’t be afraid to cut toxic people off if they belittle you or make you feel less than for being sick. It’s not a cold or the flu, and it’s not something we can cure overnight. For a lot of us, this is a hill we must climb every day for the rest of our lives.
It’s the small things that actually work for me. Over the counter heating pads, pain patches or balms work when I’m in need of a quick fix. Ice pouches and heat compresses are essential for long nights, and knowing my own limitations when it comes to doing things that might make me feel worse are part of my list of life saving techniques.
If you’re reading this and you don’t have a chronic or invisible illness then maybe you know someone that does. Reach out to your classmates or your friends that might be sick. Open up a dialogue and figure out what they need, or bring them homework when they miss class. Most importantly, try and support them with your love, and if that’s not enough, offer to wash their clothes. We love that.