The Symptom of Chronic Diseases that No One Talks About
**please note that when I use the words “chronic disease” I am describing autoimmunities and other diseases that cause people long term health problems that are relatively unknown or untreatable**
Joint pain, muscle pain, numbness, fatigue, swelling of the joints, headaches, loss of appetite, etc. People with chronic disease have symptom lists longer than a page. It’s never ending and it’s things people struggle with on a day to day basis. The thing about chronic disease is that there’s typically no rhyme or reason behind any of it. Yes, there’s a correlation between stress and flare ups (and I strongly believe stress is the entire reason behind most of them and that’s what causes the system to break down, but nothing has been proven yet). The piece that most people forget to talk about is the mental health aspect.
Picture this: a 23-year-old, new graduate is trying to begin her life as an adult and has finally gained her independence to start fulltime in the workforce, live on her own, make a living, prove herself and her worth to the world, but she is rapidly losing her vision. This is not hypothetical, this is the reality of one of my very dear friends. During her senior year of college she found out that she has juvenile open angular glaucoma that for some reason made her develop such high pressure around both of her ocular nerves that they have began to die. Over a year later of trying surgery, medications, painful eye drops, lifestyle changes, diet changes, everything in the book and she’s officially blind in one of her eyes and soon to be in the other. She’s 23. This is unrepairable.
Now, I’m not telling her story for people to feel bad for her or to start awareness about glaucoma, but there is a very important lesson with this story and it’s one I can relate to as well. I spoke with her recently on the phone and she, understandably, is having a very hard time not only accepting her reality, but adjusting to her new lifestyle. Life is hard enough when you’re 23, trying to find a job, trying to make a living, be an adult for the first time, and be independent, but now add losing your vision to that list. There goes all of her independence, goals for a career (she can obviously still have one, but it will be different than she has planned and imagined her entire life up until now). She can’t drive, she often bumps into things, she can’t even run outside because she falls and this is a girl who ran 12 seasons of track and cross country in college (try telling an avid runner that he or she can’t run anymore and see what it does to his or her mentality). Eventually, she’ll probably be able to do some of these things again, she can still have a normal life, she’ll be able to live and work almost independently, but making that adjustment is really, really challenging. Which brings me to my main point of the article; sometimes chronic diseases are accompanied with some incredible self-loathing. Right now she hates what her body is doing to her. She feels limited, her life feels like a mess and words can’t describe the disappointment, fear, and stress she is going through.
She’s totally entitled to feel this way. I know because what I go through isn’t nearly as devastating and there are days I absolutely hate my body. I work in the fitness industry, but I can’t workout. I haven’t been able to workout in over a month as I’m writing this and I absolutely hate it. I hate how I feel, I hate how I look, I’m embarrassed and ashamed and want to hide in my house all day. My body is tired all of the time and it feels like I’m just wasting my life lying on a couch or in bed because I physically cannot move. And even when I haven’t done anything to cause the flare up like exercise or not follow my diet, or not get enough sleep, I still get sick. Yes, feeling this way can feed the negative energy, but sometimes this is part of the process. Holding in the negativity and pretending to be positive all of the time is even more negative. No one can be perfect and optimistic about dismal outlooks all of the time. Sometimes it’s good to feel angry or sad even if it’s about yourself as long as it’s not long term. It’s part of the process.
So here’s my advice: be angry, be upset, feel bad yourself, and then move on. Find a professional to talk to. Find a support group. Ask for support from friends and family. Tell people you aren’t okay. You’re allowed to have moments of weakness! Be frustrated. But, allow yourself to process everything and move forward with your life anyways. Take care of yourself to the best of your ability. Given all of your resources do whatever is in your power of control to make your life good and ask for help to keep improving. Even though a chronic illness seems to take away your life it doesn’t, if anything it makes you more empathetic and a beacon of positivity and strength for other people that are going through the same things. People who are mentally tough didn’t get there by staying strong in hard situations, they break down, regroup, and grow from the adversity in their lives.
And for people reading this who have family, friends, and loved ones in these situations please stop telling them that they’ll be okay. We know we’ll be okay. Sometimes the only thing we need is someone to confirm how shitty our lives are right now and just listen to us complain. With that being said, sometimes we need some hand holding and positivity as well. There’s no protocol on how to accept life-altering diseases and everyone will be different. Do what you can and ask from them what they need from you. It’s also okay for you to be angry. Chronic illness affects more than just the person who is sick so make sure you seek help and guidance from behavioral health specialists as well and family support groups as well.
An update on my friend for those of you still reading: she’s one of the strongest people I know and after our conversation, some moments of getting angry at her body/people in her life who tell her she’s going to be okay, she regrouped and is doing the best she can right now. Hang tight nugget. Keep living your best life.
*January is National Glaucoma Awareness Month*
Wear green to show your support and help spread awareness.
Check out these resources below to learn more or donate to the cause: