In hindsight, I look back and think: Should I have talked to my doctor about this earlier? I’d had stomach issues all my life — ulcers and severe acid reflux — but it didn’t start getting really bad until much later, about 2004 or so. I was working as a Police Service Technician, and my job put in me in high-stress situations. That’s when the Crohn’s became more active.
While I didn’t struggle to eat, like many people with Crohn’s do, I found my body wasn't absorbing any of the nutrients from the food I ate. The result of this malnourishment was I kept getting more and more exhausted. I was so tired I couldn’t think properly. With my job, I needed to be able to think clearly to write warrants, do investigations, and work on crime scenes. But I had gotten to the point where my mind was just too exhausted, and I was in a lot of pain all over my body.
A doctor was finally able to diagnose my Crohn’s at around the age of 50. Before that, I hadn’t really known what to make of all my symptoms. I remember at one point, the doctors were going to have me swallow a tiny little camera, but they found during the procedure that there wasn’t enough room for the camera to pass through. That’s when I realized the gravity of my situation.
I loved working in law enforcement. I would have worked much longer if it hadn’t been for my Crohn’s disease, but I had to retire early because I just couldn’t do it anymore. My symptoms were preventing me from doing my best job. It was mainly the fatigue, but the other symptoms were detrimental too. If you talk to the doctors, they're mostly focused on dealing with the gut aspect of Crohn’s, such as the continual diarrhea. But over the years, I’ve learned that Crohn’s is an all-over body issue. It’s not just in your gut. Your joints can flare up, your eyes hurt. Your entire body is at stake.
In March 2015, I applied for disability, and I decided to try to get Medicare. I was in really bad shape by then; my Crohn’s was definitely not under control. At one point, my acid reflux was so bad I had to sleep sitting up to keep the acid from coming up into my mouth.
Shortly after I quit working and applied for disability, the doctors put me on some new medications, and I got much better. Nowadays, my Crohn’s is under control for the most part. I did get really far down in the ditch before they were able to get me to this point. I am blessed, though — really lucky I never lost any intestine like some Crohnies do, and I never had any severe blockages or fistulas, which was my biggest fear.
Although I’ve been doing well over the past year, I don’t know if I’ll ever get completely back to my old self. Maybe that’s because of Crohn’s, or maybe it’s just being 64 years old. I used to work on patrol, which required me to be pretty active. I worked 16-hour days sometimes. But now, I just couldn’t do that kind of thing. I still struggle with being tired all the time. Sometimes, I can’t sleep at all; and then when I do sleep, I sleep the sleep of the dead — this morning, for example, my alarm clock went off and I didn’t even hear it.
Thanks to my new medication, I at least feel well enough to do more fun things these days. I like to fiddle around in the garden, I go out with my friends, and I’m really involved with my church. That said, I haven't gotten back to taking long walks or being too active, and I still feel like my mind isn’t as sharp as it was before Crohn’s.
I live alone, but I have amazing friends who have been helpful while I’ve dealt with Crohn’s. For example, I have had friends come and drive me to the doctor when I needed them — times when I was too ill to drive myself. I have supportive friends from church too.
My best advice to other people dealing with chronic illnesses would be to get active on social media. For me, that was one of the most uplifting things I did, getting on Facebook and connecting with patients with similar stories. They're fighting the same battle. As you go along, you see other people struggling and find you can offer them advice, too. The friendships and support I’ve gotten through social media have been so valuable.
To be honest, when I was at my lowest point, the biggest thing that helped me through it was having my animals. It helped to have to actually get out of bed and take care of them. I have two cats, and I got a puppy this year — she’s a border collie mix. She’s beautiful, and a total sweetheart. Even though the puppy stage can be a lot of work, it’s great because it helps me be more active.
In a some ways, I'm more confident than I was for a while. I used to blame myself for not having enough energy, for not exercising enough, and for not eating as healthy as I should. But when you find out you have a chronic illness, it’s a validating moment. You think, “Maybe I’m not just lazy. Maybe it’s not all in my head.”
For example, when I was working in law enforcement, there were times when my Crohn’s was so bad I had to just say, “I can’t do that today.” Some of the younger employees would say, “You look fine, why can’t you do it?" Finally getting a firm diagnosis justified the fact that I did feel awful, and I really couldn’t do it.
In that way, my diagnosis was freeing. When a judge finally said I was approved for disability and listed all the health problems I have in addition to the Crohn’s, that was freeing also. You doubt yourself when you have an invisible illness, when you look fine but your body refuses to cooperate.
I’ve learned having hope for the future is key — hope that eventually something will get better. I’ve always tried to focus on other people rather than myself, to tell other people, “You’re doing just fine,” and try to be something positive for somebody every day. It may sound a little cheesy, but I do it, and it’s powerful.