The Struggle of Life with a Chronic Condition

I know as someone living with an auto-immune disease, we are always told not to stress, what stress does to the body and how it will only make our conditions worse. However, on top of everyday “normal people struggles” like work and bills, on top of that my car issues, I’ve recently been told my job will no longer be offered, resulting in the loss of my insurance. I am so stressed and overwhelmed that I’m actually crying as I type this.

Dealing with chronic pouchitis and loss of insurance

I’ve been dealing with a lot of inflammation in my J-pouch over the last year or so. It was originally diagnosed as pouchitis, now acknowledged as chronic pouchitis. I had to do a lot of blood work and a fecal exam, needless to say, it wasn’t good. Wednesday I have another Sigmoidoscopy scheduled and of course, no one at my job is working with me and I am required to do a work accommodation (which I have been trying to complete for weeks), although my position won’t even be offered in a few months.

I think it’s sad that we as patients, as people, have to go through things like this and struggle just to get healthcare or utilize benefits. Up until this point I have been dealing with the stress okay. I have been trying to stay positive and continue doing the best I can but the closer it gets to my procedure, the more worried I am that I won’t be able to receive treatment, and the more anxious and upset I become.

It’s even more difficult feeling like you’re the only one who understands the importance of you receiving proper treatment in a timely manner. I’ve never been so unsure of myself or my health before in my life. I am very worried I will get so sick that I will have to resort back to an ostomy. I don’t feel like there’s anyone I can talk to about these issues. People don’t understand what it’s like to have to rely on these expensive treatments and medications. People don’t truly understand what an ostomy even is or how much it costs to even get a month’s worth of supplies.

Feeling hopeless and defeated about losing insurance

Just thinking about losing my insurance makes me nauseous. I think if people truly understood ulcerative colitis and what it’s like to live with the condition, they would be a little more empathetic to the patient need. I wish I had something more positive to share, but unfortunately this is the reality of life with a chronic condition: constant concerns about income and healthcare, treatments and affordability.

I hope something does change, and not just for me, but others who have to deal with these same burdens as well. When I finally opened up about my losing insurance and my concerns, I received messages from other patients saying how they can relate or they’re dealing with the same thing. Until change does happen, I will try to be positive and keep my head up. I just continue to work hard and try my best and just pray for good results in return.