When it comes to our health, we tend to think very literally. If my knee hurts, I go to the doctor and I get it checked, and maybe it’s broken, so I wear a cast until it heals. If I have a cold, I take Dayquil. But what if you suffer from a chronic disease, one not everyone can see from the outside? These are called silent diseases. Sometimes it’s hard to see from the outside that you are sick, but on the inside that is sometimes all you can focus on.
When it comes to health, we need as a society to not make assumptions about someone just because they appear healthy on the outside. Sometimes you feel alone, but I am here to tell you not only are you not alone, but that you are more than just the disease you are tackling. You are more than an illness, you are alive and deserve all the happiness like anyone else. And you are incredible for living day in and day out with the obstacles you face, even though not everyone else can see it.
In my own life, I have faced my own assortment of chronic diseases that seem invisible. We could go into mental health here too, but I am going to maintain a focus on physical health and diseases for this specific topic. Silent diseases are hard to talk about, and therefore often aren’t, which make your disease, and you, feel invisible. I will share with you my personal experience so hopefully you too don’t have to stay silent or feel alone anymore. This is a disease which many Americans actually live with and it’s called ulcerative colitis.
Since I was eleven years old, and for the past eleven years since, ulcerative colitis has been a disease I faced on and off silently and alone. Ulcerative colitis is a digestive disease which effects the colon. The colon attacks’ itself, creates ulcers, and, if severe enough, can develop into forms of cancer or other serious bowel diseases such as Chrones’ disease.
This illness is working against itself, which means when you live with it you have no control over your digestion, bathroom habits, pain, diet, what will be ok or not when it comes to food and the colon generally just continues to become diseased until it is destroyed entirely. Often, patients take medications, like pills or steroids, and there are periods when the disease is controlled and put into remission. But like all medications, after a few months or years, our body creates an antibody to the medication and it no longer works to the same affect. This, plus other environmental factors, can put the disease out of remission, and into what’s considered a flare up or relapse.
The thing about silent chronic diseases is there isn’t just a one-and-done process to heal. It is a life long illness that comes back again and again. Flare ups are when the symptoms are most severe. Some people lose a lot of weight and can even throw up from the pain in the intestines and colon, and sometimes people can stop being able to eat almost all together at different points, so they have to drink nutritional shakes to get by. If this is the state of the patient, there is one last chance to resolve the disease and that is a surgery, which removes the colon permanently.
For most patients this is the only way to get “cured,” but if the patient also has other irritable bowl diseases or Chrones’ disease, they still may be affected by issues despite no longer having a colon. In my case, it is time for surgery. After an eleven year battle, and all treatments not lasting more than a few months at a time before failing, it was the last chance I had to cure my colitis. Getting rid of the colon would ensure the disease would end, because for people with colitis, that is where the disease exists, so take away the problem, and then it is solved, hopefully. I am scared to do this procedure, but it will take care of my quality of life and I can live free from so many issues once its all said and done. I hope anyone suffering finds relief, I am looking forward to mine.
It can be hard to navigate when you’ll have good or bad days, or how to tell those you love when you need to make adjustments to deal with your disease or even that you suffer from it sometimes. Some days, it may even feel like it’s taking over who you are. Know that it is not. You have nothing to be embarrassed about, whether you suffer too from ulcerative colitis or some other silent disease. Just because it’s hard to tell on the outside, it doesn’t mean your experience isn’t real and valid.
The illnesses you face are only a part of the larger scale of who you are. The best way to cope is to remember you are not alone and to not be afraid to say something if you feel comfortable when you need to lean on others for support. Since silent diseases are silent and hard to detect, be your own best advocate, you don’t have to deal with it alone and those you love will support you the best they can even if they’re not in the same shoes. Speak up and remember you are not invisible, and you are not your disease.
Photos: cover 1 2 (3 personal photo)