Some days I feel as though I gave myself this illness, that I should feel guilty that I have a chronic disease that can’t be cured. This is madness I know. We are constantly surrounded by news stories or articles and even other people who have no medical background telling us we ate the wrong things or didn’t exercise enough.
I have lived for many years suffering with symptoms of #ibd and felt like a fraud or a hypocondriac because my medical professionals didn’t connect the dots or didn’t believe me.
I spent many a day crying in pain, lost and adrift to deal with something that I believed was either in my head or not that serious and to just get on with it.
Even with a diagnosis the ignorance is unreal, everyone is suffering. It doesn’t matter how small or large, we all have different coping mechanism and different access to care or support.
Things that really grate on my nerves that people say are:
- Your diet is bad eat better. Veggies and fruit are great. Eat more fish eat more red meat
- You don’t look that sick
- You look well, have you lost weight?
- IBD isn’t that just tummy ache? Do you poo alot?
- You don’t know tired until you have had kids
- You need to get more sleep/ shouldn’t have stayed up so late
- It’s all in your head
- You’re paranoid
- Mental health is for the weak
- What are you crying for now
- You’re so stressy/fussy
- Stop being so soft/You must have a really low pain threshold
- What you need is some fresh air/exercise
- I have ibs/constipation ( you can sympathise but don’t empathise unless you have it, you don’t get it until you get it)
- Milk/dairy is bad for you, evidence suggests it’s MAP
- Have you tried removing x,y & z from your diet?
- I know someone who had that and they are cured.
- Can’t you wait to use the toilet? Hold it for a bit?
- There is always something wrong
- You are lazy
- You should try multivitamins
- Medication is bad for you. Clean living is what you need
- Have you done your research?
- I wish I had that ( you can’t pick to loose weight but ignore all the grisly details of inflammatory bowel disease)
- What are you eating that for it’s bad for you.
A friend once told me that the road to hell is paved with good intentions and he was right. Yes I don’t always look sick, I can be fine one minute and not the next. No I’m not making things up for attention or to be lazy. I feel guilty enough pretending to be normal, letting people down and trying to hide my pain from the rest of the world.
Unsoliticed advice is not helpful, it’s detrimental to the emotional and physical well being of someone who is chronically ill.
I did not cause my auto immune disease and I should not have to justify why I’m doing or not doing something because of my health.
Your crystals or positive healing vibes or clean diet will not cure me. I am sick and I need medical treatment and to be treated with compassion and less judgement. (Yes I understand we are all different and these things can help certain people cope, but not cure)
If I want your opinion/advice I will ask for it.
And if I need to go to the toilet now! I’m going to damn well go now! And If there is a que in the ladies toilets I will use the disabled facilities.
I don’t want to live my life in fear of the unknown, wracked with guilt or embarrassment and hiding inside.
I will shout about IBD from the rooftops if I have too. I am not ashamed (well not today anyway) and why should I be?