Sometimes, trying to get non-suffers to understand about having Crohns Disease or Ulcerative Colitis can be really hard work and, I know from my personal experience, sometimes you wish that you could just hand them a booklet to read but all of the booklets are full of either really detailed embarrassing toilet habits that you don't want them to know or all of the medical terms that you don't really understand yourself nevermind someone who you're trying to make understand your condition and/or life now so that their questions are answered already for you and they don't assume the worst. I'm really hoping that this blog post is going to help a lot of other suffers.
"What am I supposed to ask you about your illness?"
Ask me how I fell about myself. Ask me about my sleeping habits. Ask me about my joint pain. Ask me about my nausea. Ask me about my heartburn and indigestion. Ask me about my million trips to the bathroom. Ask me about my weight. Ask me about my brittle nails and my hair thinning. Ask me why I'm so tired. Ask me about the medication I have to take for the rest of my life. Ask me about my depression and my awful mood swings. And I'll tell you all about the invisible illness that I struggle with every day.
"Do you need me to do anything for you?"
Just be with me and support me, don't make me feel bad about myself or about my illness. Whenever I am in a flare if you could offer to do things like laundry, shopping, or even cooking (simple easy foods are best, nothing spicy or citrus based, non-wheat based cereal, veggies without the peel or seeds and white bread) that would be incredible. A lot of sufferers have such hard painful days that we forget to do laundry, eat, and sometimes even drink - staying hydrated is so important for my illness.
"You're just staring into space, are you okay?"
This is called "the blank stare". No, I'm not okay - I am in horrendous pain and I just need to sit and be still. This will pass soon but whilst it is here please stay close so I know you're there if I need you but please try not to ask me anything or even speak to me at all because I need to concentrate on just staying alive and building some energy.
"Has your condition actually changed your life?"
It never occurred to me that one day I'd wake up sick and never get better. I never ever realised how much I took for granted - working, cleaning, shopping, going for long walks, even being in a car, eating certain foods, going out with friends - until chronic illness came into my life when I was only twelve years old, nothing has been the same since.
"Can I catch it from you?"
No. But sometimes I wish that I could give it to someone else for a few hours just to give me a little break, but then I also would never wish this pain on another person.
"At least you don't have cancer!"
No, I don't. I have a terrible chronic illness, that will probably eventually kill me. I take dangerous medications, occasionally the same used to cure certain types of cancer, or put it into remission on a daily basis. How many people have been cured of my illness? None. My illness will never be cured, it will never ever go into complete remission, I can only manage it and my pain, and monitor it closely with the help of trained doctors and nurses, as it could worsen at any time. But you're right, at least it isn't cancer.
"Are you sure that it's Crohns/Colitis? I can't see it."
The worst thing you can do to a person with an invisible illness makes them feel like they need to prove how sick they are. I have this weird relationship with my chronic illness where I spend 75% of my time trying to pretend it doesn't exist and the other 25% trying to explain that it does exist to people who don't believe me. A chronic or invisible illness isn't just something that other people can't see, it is literally a major health problem that could be slowly killing me from the insides out and because it starts inside my body, I would never know until the signs start to show on the outside and it could be too late.
"No one can be in that much pain! You just need some 'get up and go' about you!"
I am in pain, all of the time every single hour of every single day. I'm not looking for sympathy, I'm not asking for judgement, I'm not a drug addict, I'm not lazy, I'm not seeking attention, I'm not starting drama. I am going through a lot with my health - all of the time, and the last thing I need is for you to make me feel worse about my situation. I just want relief and understanding.
"What's a flare?"
A flare is when symptoms of a chronic illness become excruciatingly painful and "flare up". Some flares can be over quickly whilst others can last months or years. Stress, hormones, changes in the weather, or doing more than normal can cause a flare, but sometimes they can also occur for no apparent reason.
"Why are you always go tired? You're just being lazy!"
Some days I'm so exhausted from fighting my disease that I can't imagine doing it forever... even though I'll have to. I do things at pain levels others wouldn't even consider moving at because if I don't, I won't have a life. This doesn't mean I'm having a "good day", it only means that I was able to be stronger than the pain for part of the day. It took me a long long time to realise that when I'm resting on a flare day I am not 'wasting the entire day doing nothing'. I am doing exactly what I need to do, I am recovering.
I really hope this blog post helps a couple of people out with explaining what these horrible diseases are to live with, for more information please visit the Crohns Disease or Ulcerative Colitis UK website for helps, advice and extra ways to help.
With love, Alisha Valerie. x