I Did Everything Right and Still Got a Disease
I was recently scrolling through Instagram when I saw a post from a self-proclaimed fitness coach. It said: “No disease is inherited! Laziness causes disease, treat your body right!” First, I wondered, “has this girl skipped every science class ever?” Second, I wondered, “do some people seriously think all diseases are avoidable if you lead a healthy life?”
Her post was meant to inspire people to be active and eat well to prevent disease. She did not mean to criticize people living with genetic diseases, illnesses, and disabilities. But regardless of her intent, she spread a dangerous message — that diseases are not inherited, and therefore, people are responsible for the diseases they acquire.
No one "deserves" their disease
I think there is a common belief in Western society that we get what we work for — rich people deserve to be rich and the poor deserve to be poor, etcetera. So when we see someone suffering from a disease, we assume there is some level of deservedness. If someone has heart disease, cancer, or arthritis, there must have been something they could have done to avoid it — right? Oftentimes, the answer is “no”, and I am the perfect example.
Lifestyle choices aren't everything
If that were the case, if it were just as simple as making good choices, then believe me: all chronically ill people would have happily avoided a life of pain. But it doesn’t work that way. Many diseases, including my diagnosis of ankylosing spondylitis, are genetic and random. No one — no matter how healthy they are — is safe. The belief that diseases emerge due to “bad” choices is harmful, as it places the responsibility on the sick person, framing their disease as something they brought upon themselves.
I did everything I was supposed to do
At the time my ankylosing spondylitis developed, I was 18 years old. I was exercising every day, eating a balanced diet, and taking my vitamins. I was a varsity-level figure skater and had never smoked a cigarette. I was doing everything I was “supposed” to. But guess what? I still developed a disease.
A fun little gene called HLA-B27, that about 8% of the population has, was detected in my blood. Of the people who have the gene, about 5-20% go on to develop my painful chronic illness, ankylosing spondylitis. There was nothing I could have done to stop this from happening to me. No amount of yoga, cross-fit, or superfoods could have prevented AS from attacking my body. Nothing.
Pay attention to science
We need to pay attention to scientific evidence and stop spreading the idea that disease is entirely avoidable. In certain cases, we can and should make healthy choices to lower our risk of disease. But in others, we have no control. I don’t want to be looked down upon as someone who made “bad” choices and got myself a chronic illness.
I was not lazy or unhealthy or wrong — just unlucky. If you are disease-free, I am happy for you; however, please do not sit on a high horse believing you are better than sick people for taking better care of your body. It is one thing to promote a healthy and active lifestyle; it is another to use disease and disability as a scare tactic. The sick people didn’t ask to be sick. The sick people didn’t bring this upon themselves. Some people simply lucked out in this twisted lottery, and some of us did not.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?