I’m ill, but look fit. Life with IBD.

Some disabilities are more obvious than others. Many are immediately apparent, but others, known as invisible disabilities, are not. I may not look sick, but on the inside my body is trying to kill me.

One of the many invisible and chronic illnesses I suffer from is severe Ulcerative Colitis, an inflammatory bowel disease (IBD). This is a life-long autoimmune disease. My immune system attacks itself. The primary symptoms of active disease are abdominal pain and diarrhea mixed with blood. Weight loss, fever, fatigue and anemia also occur. I spend half of my life on the toilet. I need several medications, including immunosuppressants, to treat symptoms and maintain remission.

In general, I’m medically stable and can receive care at home. Only the worst flares require hospitalisation. My wife Kia is my care giver.

Self-isolation

Because immunosuppressive drugs put down my immune system and natural defenses, I am at an increased risk for infection. I have to maintain impeccable hygiene. I’m practically in self-isolation all the time. I have to stay at home and restrict activities outside my home.
I have to separate myself from other people. I have to avoid public and crowded areas. I have to avoid using public transportation, ride-sharing, or taxis. In order to protect me, the same precautions apply to Kia, my wife and care giver.

I never know when I’ll have a good day. At any moment my symptoms can flare, or side effects kick in. That makes it hard for me to plan things. More often than not I have to cancel or reschedule my commitments with very short notice.

The illness takes its toll on my weight. I’m 185 cm tall and I weigh only about 56-60 kg. I know I’m too skinny but cannot help it. Dietary changes improve symptoms and I eat what my body can handle. I follow a strict, low FODMAP diet. My eating habits may be unusual, but to me, this is my safe food. Sure enough, a low weight is anyway much better for my physical disabilities; back injuries, problematic joints and bad knees.

Luckily the camera loves a skinny model.