Fear of Trying New Treatments Because You've Been Burned

As people who suffer from inflammatory bowel disease, saying we endure a lot would be a gigantic understatement. Many of us have been through multiple surgeries, numerous hospitalizations, terrible side effects from a medication, unknown and life altering symptoms, endless doctors appointments, unbearable pain, mental health issues, countless medical tests, blood work up the wazoo.. I could go on and on.

We all go through an enormous amount

This holds true for anyone who lives with a severe, chronic illness in my opinion. We all go through an enormous amount. More than anyone should have to in five lifetimes. It is also not just ‘a surgery’ or ‘a medical test’ or ‘a doctors appointment’ or ‘a trip to the hospital’ --- it is about how each and everything we go through impacts not only our lives but the lives of those closest to us. All of the things so many of us have to go through are traumatic in ways someone lucky enough to be on the outside can’t even begin to imagine.

I have been burned a lot over the past 18 years of living with IBD. I have had wretched experiences with doctors. I have had surgery after surgery since it was always supposed to be the last one. I have seen firsthand how strong certain medications and their side effects really are. As I am sure anyone living with Crohn’s Disease or ulcerative colitis can attest to, we all deal with so much. A fellow contributor and friend wrote more on this specifically here.

Resisting treatment

I wanted to bring this up today because I have been resisting a certain kind of treatment for a long time because of how badly things didn’t work out for me in the previous years. On one hand, I thought (and still do) I was being smart by trying to explore every other avenue available for my condition. On the other, I could have been living a better quality of life if I had given in and the treatment recommended to me actually helped.

Because I have experienced a lot over the years, I have a difficult time trusting doctors. I especially feel this way if I believe they don’t really “get it” or get me. I also have a great deal of fear when it comes to certain medication side effects. I rationally know that just because I had a negative reaction to a medication,  it doesn’t mean that will happen with every single medication in that particular class of drugs. However, I have yet to shake those worried feelings.

I finally gave in

After trying anything and everything for so long to avoid going back to a treatment plan I once had a bad experience with, I finally decided I no longer had a choice. My quality of life was too bad. I finally looked deep within myself and knew I no longer had the ability to reject it. I had to do something.

I am starting the process of adding a new medication into my routine. I am in the beginning stages and on the lowest dose imaginable. I am really thankful and feel positive about the fact that my doctor understands how traumatic my prior experiences were with this class of drugs. Therefore, we agreed to go slowly and I do feel as though we are working as a team to get my health where I want it to be.

After a couple of weeks, I haven’t experienced any side effects (fingers crossed) and I feel a little better than I did prior to beginning this new regimen. My doctor and I both knew we wouldn’t see any earth shattering results until I was on a larger dose but the fact that things are going well so far keeps me hopeful.

I understand the distrust

I share this with you in case anyone else is worried about beginning a new medication, for any reason. I understand how much living with a chronic illness like inflammatory bowel disease can make you especially scared or distrustful that something might go your way. You are not alone if you are avoiding trying something that may offer you a better quality of life because you have been burned in the past. I get it. It makes total sense. YOU make complete sense.

If you feel like you have a lot of other things to try before “giving in” to something that scares you, I am with you. If you feel like you have exhausted literally everything available ten times over and you have no choice but to try a medication you swore you’d never take, I am with you.

I will never tell someone to just get over a fear or anxiety they have; Especially when it comes to health related matters. I will say that while your fears and anxieties are totally justified, work hard to constantly re-evaluate yourself and your situation.