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Having the right health care in today’s world can literally save you thousands of dollars each year and give you access to lifesaving equipment and medications. But not all health coverage is the same, and everyone will have varying experiences regardless of what insurance they have. This has been my experience with Veterans Affairs with my rare disease.

After being medically separated from the United States Marine Corps with ulcerative colitis (UC), I came home being told that I will never have to worry about health care again. One could say it was a final parting gift from the military. This in its entirety was a huge weight lifted off my shoulders, while I tried to plan for my future. Little did I know how beneficial this would be in my near future. 

For the next several years, my UC would flair up from time to time and I would have to go to the hospital for treatments and colonoscopies. Mind you, I have not paid a single cent for any medications, colonoscopies, or doctor appointments ever. Other than my health itself I could not have been happier.

But then my new doctor discovered something of concern in my colonoscopy. After other tests, the diagnosis was systemic mastocytosis (SM), a rare blood disease that makes your body overproduce white blood cells that can affect the entire body in multiple ways. This has caused me to adjust my everyday life while I try to understand this rare disease.

Before my SM diagnosis, my visits to the VA seemed to be pretty reasonably straightforward and to the point. But now I feel as if there might not be a complete understanding of exactly how this disease affects people differently. For instance, with my UC, I had one gastroenterologist (GI) doctor and that was really all I needed other than my regular care physician. But now, with my SM, I have a GI doctor, a hematologist, a dermatologist, an allergist, and a hepatologist—not to mention the almost monthly lab tests I have to do now. 

Read about experimental therapies for SM

The VA has been extremely helpful throughout this new diagnosis. However, I have had a few complaints. One is that it can be a very long time before being seen by a doctor or scheduling an appointment. The VA is known for its very long wait times to be seen by a specialist. Especially after COVID, appointments have been more difficult to secure. You can call and get an appointment set up pretty easily but, it could be anywhere between 2 weeks to as long as a couple of months before there is an opening for you to get in.

This hurry-up and wait can be a painful reminder of what my military experience was like. Of course, if things get really bad I can go to the emergency room (ER) but with this rare disease that’s not always a helpful solution. The last time I went to the ER for my SM my entire body was covered in a red blotchy rash and after 2 hours of being there, they sent me home telling me to take an antihistamine. By the way, that did not help me at all. 

It is common to hear veterans complain about their experience with the VA. But I have to say that the VA in Portland, Oregon, where I live has been very helpful for the most part. It might be an hour’s drive for me but when I look at the big picture of how much assistance I get, I really can’t complain. Sure there can be a wait to get in to be seen and maybe sometimes it seems like someone isn’t quite understanding what you are trying to explain to them, but at the end of the day, if it wasn’t for the VA, I do not think I would be here today.