This week is National Invisible Chronic Illness Awareness Week in America. A fact I was made aware of through Natalie’s post of the same name. Go read it first, this one can wait. Natalie has some great things to say particularly about suffering from type 1 diabetes.
To get the word out about National Invisible Chronic Illness Awareness Week the organisers started a meme to help the “invisible” sufferers
have a moan share more about what they’re going through.
- The illness I live with is: Indeterminate colitis. A lovely combo of ulcerative colitis and Crohn’s disease.
- I was diagnosed with it in the year: 2003 (January)
- But I had symptoms since: 2002 at least 6-12 months before being diagnosed.
- The biggest adjustment I’ve had to make is: Acknowledging that I’m sick, and that sometimes that means I’ll be in pain. And sometimes I’ll be debilitated, and that’s life now and I don’t have to pretend I’m ok when I’m not.
Trying to remember to take my pills every day and get blood tests monthly.
Never knowing whether I feel sick or tired because of the disease or because I have food poisoning, or ate a shitty diet that week. Whether I’m hungover or my gut is packing a sad because I had both alcohol and coke. And not knowing what it would be like to not be sick, am I really having a good week or is it just good compared to my bad weeks?
- Most people assume: That I have constant diarrhoea.
- The hardest part about mornings are: Going to bed before the sun rises.
- My favourite medical TV show is: House – cynicism, atheism, sarcasm, awesomism.
- A gadget I couldn’t live without is: My computer? Medical wise…blood tests and colonoscopes.
- The hardest part about nights are: Remembering to take my pills.
- Each day I take 7 pills.
- Regarding alternative treatments I: Have tried a few things that didn’t work. Inflammatory bowel disease (IBD) is different for everyone, something that may work for one person might not work for another. I’m fairly skeptical about alternative treatments, especially in regards to chronic illness.
- If I had to choose between an invisible illness or visible I would choose: Invisible. I like to pretend there is nothing wrong with me.
- Regarding working and career: I would find it extremely hard to work in retail as I get a sore back after standing for an hour and I often need to take bathroom breaks on short notice. Bowel disease will not wait for scheduled break times.
- People would be surprised to know: That people died regularly from having an IBD as recent as 50 years ago. Despite the many negative side effects steroids have saved so many people from having to get their bowels removed.
That I probably had been very very sick for almost a year before being diagnosed and only went to the doctor about it when it became really bad (and he had absolutely no clue as to what it could be). At 16 I was clueless and had absolutely no idea that it wasn’t normal to go to the toilet so often, to have diarrhoea, and to be in occasional pain.
- The hardest thing to accept about my new reality has been: Knowing that there is no known cause or cure and I’m more likely to get cancer than most people.
- Something I never thought I could do with my illness that I did was: Go camping. But only because a portaloo was on site.
- The commercials about my illness: Are non existent. Most people have no idea what I’m talking about when I say ‘Crohn’s disease’, ‘ulcerative colitis’ or ‘indeterminate colitis’.
- Something I really miss doing since I was diagnosed is: I was only 17 when I was diagnosed so I don’t really remember what life was like before colitis.
- It was really hard to have to give up: Caffeine and ice cream. I still have them occasionally and I really pay for it.
- A new hobby I have taken up since my diagnosis is: Blogging.
- If I could have one day of feeling normal again I would: Get hyper on V (energy drink), stuff my face with popcorn, eat a tub of ice cream, and not feel sick afterwards.
- My illness has taught me: Finding a great doctor is a precious gift. Medicine is one of the greatest things in the world. Despite the long waits public health care is lifesaving and something every country should have. Getting blood tests isn’t scary. Taking pills isn’t hard (before this I couldn’t even swallow pain relief tablets, I had to learn quickly!). The Boy must have really really liked me (or was too lazy to do anything about it) to stick around when I got so sick at the very start of our relationship.
- Want to know a secret? One thing people say that gets under my skin is: I hate hate hate seeing the signs in food places, swimming pools, doctors waiting rooms etc that say you can’t help prepare, can’t swim, must tell reception etc, If you’ve had diarrhoea in the last week (or however long). I know it’s the easiest way to express the concern but IBD is not an infectious disease so those signs don’t apply to everyone who has diarrhoea. IBD is an inflammatory disease, in laymans terms my bowel has a hyper immune system and thinks all bacteria is bad and attacks everything and gets inflamed. I take inflammation medication and immunosuppressants to suppress my immune system.It’s also annoying when people link my choice to be pescetarian to the disease, and when people offer me gluten free food because I tried a gluten free diet 6 years ago for a few months.
- But I love it when people: Treat me like I’m normal, and understand that I’m managing ok with medication most of the time.
- My favourite motto or quote that gets me through tough times is: I just try to remember that about 50 years ago IBD was often a death sentence. We have made amazing progress with medication and hopefully it’ll get even better.
- When someone is diagnosed I’d like to tell them: Now you know, and now you can manage it so it should get easier from here. I haven’t met anyone that has just been diagnosed, but I would be more than happy to talk with them about it and offer any support I can. And I’d recommend they shop around till they find a doctor they really click with. Mine is fantastic and it has made the whole horrible experience much much easier!
- Something that has surprised me about living with an illness is: The way it has integrated itself into life and is just a normality now.
- The nicest thing someone did for me when I wasn’t feeling well was: I was in the process of moving cities with The Boy (who I hadn’t been with very long) and we were staying at his house for a few days, half way to the new city, while preparing to move. I hadn’t yet been diagnosed but my symptoms got so bad that I couldn’t absorb my food, it was immediately coming out both ends. The Boys mum works as a nurse and could see the amount of pain I was in (what with me writing around on the floor clutching my gut and all) and that I needed to go to the hospital, she took me in the middle of the night, and waited with me for hours until I was seen. She waited with me while I was admitted, and looked after me while I was in the hospital by myself. The Boy had to go to our new city to look for somewhere for us to live so his mum was the only person I knew. And I didn’t really know her at all.
It meant a lot to both me and my mum who couldn’t be there as she was a 5 hour drive away looking after my siblings.
- I’m involved with Invisible Illness Week because: I’m sick too dammit.
- The fact that you read this list makes me feel: Happy that you cared enough.
Now go hug all your sick friends and let them know you admire them for getting on with life.
Copied directly from Definatalie.com because I feel exactly the same way and can’t put it better myself.
Disclaimer of sorts: This awareness week was started by a Christian ministry, and while I am an atheist I think it’s important to make people aware of chronic invisible illnesses. I also think it’s important to treat them with medical science, not just prayer – like in the case of the diabetic 11 year old who died because her Christian parents refused her medical treatment, preferring to pray for her healing rather than providing her treatment.