30 Things About My Invisible Illness You May Not Know
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.
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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.
/controversy
- Natalie
19 Responses to “30 Things About My Invisible Illness You May Not Know”
Thank you. Thank you for being bold, and strong, and for one day, making your illness “visible” for others to read, and be educated.
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I think it’s really awesome that you did this. A girl on a forum I go to has Crohn’s and has talked about it some – I always find it really shocking the things people will say if they can’t see her illness. She said she’s had people tell her that if she ate better, it’d just go away, or she must just not be trying hard enough, etc. etc. I think people really say asinine things like that because they aren’t informed, so efforts like this are the best way to help stop them.
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Thanks for sharing!
I am aware of Chrons disease I know a bit about it so I love your positive outlook :)
What annoys me is Drs fobbing people off with things like gluten free diets or avoiding dairy, keeping food dairies etc.. I’m glad you have been diagnosed. Even though there is no cure at least you can control it and know what is wrong to learn what might set off symptoms.
I’m glad you have good people around you too. It is frustrating when people don’t understand your illness x
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I had no idea that 50 years ago this could take someone’s life. I suppose it that sense, we’ve come a long way, I’m hoping in a few years they will find a cure. Thank you for opening yourself up so that we could be better informed. I learned a lot reading this and admire you for your strength.
How sweet of the boy’s mum to truly be there for you. I’m sure that is something you and your mom will always be grateful to her for.
Make sure to remember to take your pills today ;)
Hugs to you!!!
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Thankyou so much for this post – you have no idea how much it means to me right now, this very minute. I have an appointment with a gastrointerologist next Wednesday after approximately 5 years of dealing with the symptoms you have mentioned. They were manageable at first however as time has gone on it has reached the point where I require medical intervention.
I totally agree with the kudos you give to the public health system and to good docters. The GP I saw this Monday just gone was a man I hadn’t been to before but he was absolutely kick ass – I really had to fight the urge not to hug him. He was sympathetic and he rang the specialist and said that no, I could not wait until November for my appointment, book me in ASAP. What a gentleman.
So now you have someone who is on the road to hopefully having a diagnosis that will make life easier. I will keep you up to date :)
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Thank you all so much!
@Michelle People can say such stupid things. It really pays to ask rather than tell when you don’t know what you’re talking about.
@Katie Some of those things can help people with some of the symptoms. But in my non medical opinion they need to be combined with medication almost all of the time. I tend to think of my admission into hospital as the best thing that could have happened because it allowed me to be diagnosed by a specialist instead of going through months of testing with my GP.
@Ela With the medication available now deaths from IBD are not nearly as common. Extreme cases usually have their bowel removed and everyone else deals through medication.
In poor countries gastro disease (though not necessarily IBD) is one of the biggest killers.
@Adele ! That really sucks. I’m so glad this has helped you a bit. And I’m so glad you found a great doctor! I recall my doctor telling the specialist something like that at one point too.
Please let me know what the outcome is, though you’ll probably have to have a colonoscopy to confirm exactly what you have they should be able to start helping you with medication and give you a roundabout diagnosis.
If you have any questions let me know. xx
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what a fantastic post. i feel so edumacted reading it, i had no idea. it is important to bring attention to these illnesses that aren’t in the public eye.
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This is a really great post! One of my work colleagues suffers from this too, this is a really informative post and a fabulous idea!
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Ms. Constantine-
Thank you for your brave post! I totally relate with this, because I’m going through something similar. I think it’s a tough situation to deal with. It is really practically invisible! Thank you for your information and help! I am waiting on some labs, and posts like this makes me feel like we are not alone! Keep your head up, lady! Again, thank you!
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Thank you! I hope your labs tell you what is going on so you can get help with it. Medication really truly makes it easier to live with this disease.
If you ever need someone to talk to, about this or anything else feel free to email me. I find that people that don’t have problems with their bowels get a bit grossed out when I talk about it (no matter how hard they try to hide it). Haha
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I’m so happy so many people are doing this questionnaire! It makes me feel like I’m learning something every time I read a new post. I never knew exactly how Crohn’s or colitis affected someone, other than that they can be completely painful and life-interrupting.
Horah! More sharing means more knowledge and understanding :D
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:D
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Thanks so much for your wonderful post and participating. I’m Lisa, the founder of II Week and just visiting random blogs. I found your disclaimer interesting yet also respectful, but just for the record…. I would NEVER imagine denying myself or anyone medical care because I also believed in prayer.
I think medical science and prayer can go hand in hand. I thank goodness (and ironically, the Lord) that I have access to the medications and treatments I have available for my rheumatoid arthritis. And like you mentioned, the fact that I can LIVE with this illness in today’s age, thanks to medical science, and not have it be the end of the life.
Thank you so much for creating more awareness. I hope you were able to make some of the workshops!
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Wow! I found your blog because I love your acrylic art, and had no idea you had IBD. I am currently waiting for an appointment with a specialist, after 3 years of symptoms and being told that it was irritable bowel symptom, the Dr has finally realised that my symptoms are not normal. It’s so good to hear that there are people out there with this condition who live a normal life. And have relationships – I’m currently single and the thought of explaining to a new partern about the whole thing scares me!
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Hi Kat. That really sucks but hopefully now that your doctor is listening you’ll be able to get the proper medication and get it under control.
I have a pretty normal life and tend to only have pain when I eat things that I know will make me a bit sick! (stupid I know but I can’t deny myself coke and ice cream all the time!) It took a couple of years of flare ups and being on steroids for it to calm down.
My partner has been great through all of this. At the start when I had just started on medication, learning how my body works etc it could be a bit awkward. When things are already sensitive “down there” and inclined to act however they like whenever they like, and then you add another foreign thing to the mix it can be a bit uncomfortable. But now I’m all under control and I have a normal relationship. And we make fart jokes far more often than might be considered normal. lol.
If you ever want to talk about it drop me a line. :]
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Your so brave for sharing so much about something you could be so embarrassed about. It’s great your getting the info out there so more people know about it. I’ve know people with Chron’s and know that so many people have no idea what it is so good on you for sharing. It’s great to see you have such a positive outlook :)
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Go Team Kim! You have taught me something new, as per usual.
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:D Thanks Tash
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Thanks Charlie. I guess I’ve been living with it for long enough now that I’m not embarrassed any more. Bowels and their movements are one of those taboo subjects that no one wants to know about but everyone can relate to.
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