Any time I come across someone new who asks about my story, it always surprises me with how many people are suddenly experts. They always have advice around new products to try, new diets to endure, or suggestions from who knows where.
“Have you tried adding more lemon in your diet?” “It’s all that gluten you Europeans eat” “Are you getting enough sleep?” “What kind of toothpaste do you use? Maybe it’s all the fluoride in your system.” “Did you get vaccinated?”
These are just simple examples. And while I appreciate all the love and concern and I do TRY and keep an open mind. But it can be really overwhelming, because people want an answer right then and there and sometimes it feels like they want a “thank you” for coming into your life and bombarding you with this information.
Now most people mean well, but they get too caught up.
The problem is, is that there is very little known about Ulcerative Colitis in the grand scheme of things, so there is a lot of grey areas where really anything goes. And this is where things can become dangerous, because its where we are more likely to make causations compared to correlations. What I mean by this is that we start immediately linking things together without thoroughly researching it OR looking at the possibility of other links. An example that was commonly used to explain causation was the report that as the increase of ice cream sales went up so did homicide rates. Does this mean that ice cream CAUSED people people to murder? No. We can all look at this and shake our heads. Because it isn’t rational. Was it the summer time? More sunny days, so more people were going out, which maybe meant more opportunities? There are other factors we are willing to consider.
But yet when it comes to autoimmune disorders and invisible illnesses we are much more likely to look at causation and exclude potential factors that could also be at play. There are so many people who talk about how they cured their illness with diet, natural pills, new supplements, and so forth. And this always baffles me, because at this point aside from getting your colon removed- there is no cure. It can go into remission, but it can come back.
More than this is it really important that we recognize that there are different forms of remission for IBDs
- Biochemical remission: lab tests results done on stools and blood show no signs of IBD
- Clinical remission: When symptoms of IBD have lessened or are completely absent
- Endoscopic remission: No inflammation is found during a scope in the lining of the colon
- Histologic Remission: encompasses both clinical and endoscopic remission and include that biopsies taken during the scope find no inflammation
- Surgical remission: surgery has resulted in little to no inflammation in the colon
A lot of people report that they are “cured” because they are experiencing clinical remission where they don’t have any of the symptoms of IBD, but the terrifying part is that many could actually still be in an endoscopic flare, meaning you are still inflamed and increasing your chances of developing complications such as colon cancer.
Research and remaining informed is so so important. You only have one body. I’m not saying that there isn’t merit to some people’s claims. I know people who have made diet changes and have gotten a lot better, but I also know some people who tried and it ended up changing nada. Everyone’s case is unique and what works for some will not work for all. It’s really about respecting each other’s journey’s and choices. Providing suggestions but not shaming us or cramming it down our throats as if it is some unspoken truth and WE have brought this on ourselves because we didn’t try this.
Like guys, chill.
Don’t even get me started on anti-vaxxers.
RESEARCH. Empower yourself and make informed decisions and remember unless you are living my life everyday, you are not entitled to talk about how I should live mine. I will always gladly take suggestions from people, research into and make a decision from there. But don’t get upset if I decide not to do it. Don’t get offended or shame me for not jumping on your bandwagon. If I deem it is not something appropriate for me, that is my prerogative. At the end of the day it doesn’t effect you! But is sure as hell affects me!
So be wary my lovely friends. Listen, keep an open mind, but do your research and never be afraid to say NO! And this goes with anything in life, not just chronic illness.
That is all. Tomorrow I have my 6 week check up so I shall update you all then!
Toodles,
Bee.
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