The Invisibility in Illness

21st century medicine.

When people hear “chronic” or “debilitating” illness, they immediately think of something they can see. Unfortunately, it doesn’t work that way. For perspective, you can't see most Cancers; what you do see is the side effects of treatment. In a fun game of What have I learned:

If you say you’re tired, it’s often met with – Why? You didn’t do anything to be tired; You got enough sleep; Drink some coffee. You’re too young to be tired.

If you say you’re sore or in pain, it’s frequently met with – Why? You didn’t do anything to be sore; You slept too long; You should stretch or exercise. You should drink some more water. Are you drug seeking? You’re too young to be in pain.

If you mention weight gain (or loss) and the inability to lose weight, it’s generally met with – You need to make better food choices, you need exercise, have you tried intermittent fasting? You should try Keto. You just have to be in a calorie deficit and exercise more, it's that simple. You're just being lazy. You should eat more.

If you mention any kind of hormone imbalance – It’s all in your head or you should go on birth control.

If you complain about a headache – Why do you have so many headaches? You’re just using it as an excuse.

If you mention anything about anxiousness or panic – What do you have to be anxious about? You need to relax.

If you mention you have a kidney stone – You’re not doubled over in pain, so I think you’re being dramatic.

Did you work on your home exercise plan from physical therapy? – Yes, it’s not working. Well then you must not be doing it right.

If you say I just don’t feel right/well and I know my body – You’re fine. You just need to DO more. Drink more water. You should try getting more sleep.

If you bring a laundry list of symptoms to your doctor – We don’t have time to discuss all these things, it’s all in your head, your bloodwork is normal so there's nothing wrong. Here, take some birth control and antidepressants and try to relax. You should exercise more and make sure to eat less. If you’re not losing weight, you’re eating too many calories. You’re doing great, See you in 6 months.

This is reality for so many people and unfortunately, it’s mostly women. We are the hysterical sex after all. One of the things that, in my opinion, social media has actually helped instead of hurt is awareness to invisible illness. There are so many people online bringing knowledge, information and experiences to previously ignored illnesses. By ignored I mean nobody was talking about them, they were under-diagnosed and under-researched, which still holds true. There is still a lot of misconception and unknown surrounding the unseen illnesses. It’s really hard to understand one, unless you are afflicted by one, which none of us want. A little compassion or empathy would be cool though.

My laundry list of symptoms is long, only to be rivaled in length by the amount of time I have spent coping with them. I use the term cope because that is what I have done. I have not treated the ailment or tried to control the symptoms. I’ve been to the doctor, multiple actually, and I get the normal “meh” answers. Then that turns into a chain reaction which ends where I stop going to the doctor completely. I am not medically naïve, which makes a dismissal from a healthcare provider that much harder to swallow. Don’t be like me. Be an advocate for your health. If your current provider won’t listen to you and give you an answer that isn’t completely dismissive, find another one.

The Profits over People model.

Medicine is, unfortunately, a business for profits over people. These large conglomerations don’t care if you are getting quality care, just that it is billable, and they are getting paid. They don’t care if their providers have too many patients, just as long as they are seeing as many patients as possible with billable encounters. Wanna know why many doctors won’t call you with test results or questions anymore? They can’t. They get penalized for not producing enough billable time with patients and a phone call, unless it is an approved telehealth visit, is not billable. I’m not saying this is true for all physicians. Some of them are just terrible on their own. Others are stuck practicing within the parameters set by their organization (contract) or your health insurer (also contract). When you find a good one, which you will because they are out there, hold on to them. One who is empathetic, will listen to you and will work with you to try and figure out what is going on. Tell them everything. There is no TMI. They've heard it all and then some. The one who is willing to help you be your best self is a game changer. Always remember - you're not alone in this. There are millions of people struggling and suffering in a manner similar to you, coping with an invisible ailment. There are support groups, formal and informal, where you can connect with people and maybe learn some. Lastly, duck people. Let them yap and judge. The loudest people are usually shouting from the back of the theater. Let them.