Please note that I am strictly speaking for myself and my experiences.
I hear about a new speculated cause and/or a new claimed 'cure' every single day.
Firstly I would like to point out that until there is a 100%, research driven, uncontended, found, cause for this disease, then there is no chance of finding a 'cure' for it. As we know of right now, there is no way, at this time, to cure anything that is auto-immune or chronic.
I absolutely welcome information about substances, activities, diets, etc that can help reduce symptoms.
But hearing about a new 'cure' every day does NOT make me feel better. Until it is substantiated with evidence and clinical trials and peer reviews, hearing about it actually makes me feel worse (mentally and emotionally).
Even worse than hearing about what 'cures' people is hearing about the thousands of claims to what has CAUSED the disorders. Again - until it is paired with 100% proven evidence - what does this information do for me? Nothing. What does this help by telling someone who ALREADY HAS THE DISEASE? Nothing! There is no cure for it, so why bombard me with information on a daily basis that is completely and utterly unhelpful?!
I understand that those who want to try and prevent themselves from developing these disorders, this information could be helpful. But have you noticed that there is differing information on this everywhere you turn? There is even contradicting evidence!
This is some of the information you can find on the internet regarding the CAUSE of chronic and/or auto-immune disorders:
1. Genetics
Although we know that there is a genetic component to many of these illnesses, it is far from being understood and is not concrete.
2. Vaccinations
Apparently vaccines can cause a whole boat-load of health problems. Frankly I am not even sure how this would work, and it would be pretty tough to do any concrete research to find out. There are so many variables that would have to be ruled out and/or controlled. This whole idea is just a nightmare to hear about.
3. Stress
We all know that stress plays a part in aggravating an illness, possibly even trigger a pre-existing predisposition to an illness, but as far as being the CAUSE of it? Yeah I don't think so. The only illness I have ever heard of that can be caused SOLELY by the amount of stress that one's body has, are ulcers.
4. Diet
This one deserves a full page. I have heard recently that milk causes Crohn's Disease. Or what about gluten? Yep that's seen as a cause too. Corn. Anti-biotics. Pesticides. Yeast. Tap water. Using hand sanitizer. Spicy food. Fibre. Not enough fibre. Sugar. Alternate sugars. Red meat. Fish. Vegetables.
I mean seriously the list goes on and on. I am pretty sure that over the last 14 years, there had been articles laying claim to dietary causes of these diseases with pretty much every food group and hundreds of specific foods.
Let's just not eat and see if anyone develops auto-immune disorders? ;)
5. Doctors
I have heard that going to certain types of doctors could have helped cause these diseases. Or being in the hospital. I have also heard time and time again that NOT going to certain doctors could have caused them. I have been told that if I had only gone to certain doctors as a kid I could have prevented everything that I have. Or had I had surgery earlier. Or had I not had surgery at all (that one always makes me laugh because I would have died). Or had I seen this doctor or that doctor or tried this medication before this other medication. Or any NUMBER of combinations of the above.
The truth is, I already suffer from several chronic and auto-immune conditions - which, at this time, have no known cure. So what good does all of this information do for me?
Nothing.
Yes I absolutely want someone to find a cause, or set of causes, because that would indicate that we are also on the path of finding a cure. But bombarding me with information on what the *possible* cause is, or telling me what one group of people believes *could* have prevented it, is utterly unhelpful, and frankly, I find it disrespectful. Do they not realize that it just makes me feel worse? I already have the diseases. There is no going back to when I was younger than 14 and change my entire life before that.
The most aggravating part of all of this is that not one of these 'claims' has been proven. Not one!
They are such misunderstood diseases that none of the information is concrete as of yet. So what good does it do me other than make me feel worse about my situation.
So, after I have told someone which illnesses I suffer from, and that person goes on to tell me the new flavor-of-the-week cure or cause, please forgive me if I simply smile and nod and am virtually unresponsive. It is absolutely NOT that I do not care about improving my health. It's the opposite. And along with all of that - it's also different for every single person who has the disease. So hearing about how I can go into remission by simply removing this or that from my diet, or from exercising in certain ways every day, or by going to certain doctors, guess what? I have probably tried it. And if I haven't tried it, I am willing to give it a go, but please please don't word it as if it's a foolproof method of going into remission because every single person is different. Also remember that I have 14 years of experience with this. I have tried as much as I know about it.
This is just an aside:
I had a scope this week. This is the first time ever that I have had a virtually clear scope. I am anticipating that my GI *may* even use the word "remission" at my next appointment. I am not sure yet.
What am I doing differently? I have no clue!
The other side to this is that my symptoms have also not changed. I am still in the washroom 12-20 times a day (even more on bad days), it is never solid, there is blood at least once a week, and I still have pain and cramping on a consistent basis. The pain still has never gone away. And yet the scope was basically clean. (Keep in mind they cannot see past 40cm into my ileum).
So please tread lightly when you are trying to give advice to someone with chronic and/or auto-immune disorders. You may think you are being helpful, and we do appreciate that you care, but I know that when I hear about a new claimed cause or cure without real proven evidence, it just makes me feel worse about my situation. It is not helpful.
Please trust that I am doing everything in my power to feel better, to improve my quality of life, to finding ways to alleviate symptoms, and I am working with several different doctors (mainstream and naturopathic) to try and find ways to improve my health.
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