On Being Chronically Ill

I’ve written this post over and over again, and hopefully this time I’m getting it right.

I am a chronically ill person. I will be sick and dealing with illness for the rest of my life. This is an undeniable fact.

There are times when I will be in a remission and won’t be dealing with the everyday symptoms of ulcerative colitis. But even when I’m in a remission, the disease is always present. The cramps that I get for no apparent reason. The strange and sudden fatigue. The close scrutiny of every ache, pain and temperature fluctuation. The fear of being in contact with someone who “just has a cold/flu/bronchitis/strep throat/etc” and what will happen if I get your sickness. The wonder if today will be the last day of my remission and tomorrow I’ll be back dealing with an ulcerative colitis flare.

If you know me, then it’s hard to really understand and appreciate that I am a chronically ill person. It’s hard to see that behind the tan, the clear skin, the shiny hair, the robust bodyweight, and energy that I am actually very sick.

You need to know and remember that sick people often don’t look sick. Nope, we look like you on the outside. The difference is how we feel on the inside.

The other thing you need to understand is that those of us who are chronically ill – we don’t complain about colds/flus/bronchitis/strep throat/sore muscles/headaches/etc – we’ve got much bigger things to deal with. So while we seem to be able to “push through” and make the “best of it”, this is because we have no choice.

We’ve got this disease for life, it can’t be cut out, it can’t be zapped or pummelled with some cocktail of drugs. Nope, instead we take a cocktail of drugs for life. Drugs that are just as potent as chemotherapy – we swallow these in our bathrooms and kitchen on a daily basis, we get hooked up to intravenous drips every six weeks – and we do this for life. We can’t pack up and move to Europe for a year or two or go on a round-the-world trip – we need to be able to get our medication on a defined and immovable schedule.

So, yes, we may “look great” – but we’re not great. We are chronically ill. I am chronically ill. I have this for life and while the medication might give me a remission for 1.5 years (longest remission in six years) – it’s not guaranteed.

I’ve now been in a flare since early June and it doesn’t look like it’s going to end any time soon. You see the tricky thing with a disease like ulcerative colitis or Crohn’s Disease is that the doctors and scientists don’t know what causes these diseases. So there is no cure. There are only bandaid solutions. And eventually, the bandaid is going to fall off. When you get to the level of medication that I’m at, there aren’t many bandaids left. Instead it becomes a science experiment, testing out hypothesis (guesses) until we find a bandaid that sticks for a little while.

In the meantime while I may “look great”, I’m actually not. Yes, I’m still biking to work two days a week (and don’t assume that because I’m biking to work that I can’t be “that sick” – and definitely don’t say this to me…). Yes, I’m still biking on the weekends. Yes, I’m still meeting up with friends.

And yes, I’m in a constant state of exhaustion. Some days are better than others. But in between the work, biking, and just carrying on with life – I’m going to the bathroom on average 15 times a day. I go to the bathroom so much that I have to plan when I eat so I can make sure that I’m not caught somewhere without fast (and I’m talking 15 seconds fast) access to a bathroom. In addition to these constant bathroom trips, I’ve got the cramps, the headaches, the muscle aches, the stiff joints, and general awfulness that comes with being chronically ill. I know that for most of you, if you experienced the kind of “bathroom visits” that I do, you wouldn’t be going to work and you wouldn’t be going for a bike ride or braving going out in public.

But because I’m chronically ill and I’ll be dealing with this for my entire life, I like so many other people living with ulcerative colitis and Crohn’s Disease, have learned how to “live with it”. This doesn’t make it easy or “no big deal”. Shitting blood and mucous 15 times a day. Debilitating abdominal cramps. Constant muscle cramps. Ridiculously intense headaches. These are all a pretty “big deal” and when you add them all up and squish them into one day – well this is just the life of a chronically ill person.

I am a chronically ill person.

The reality is that I can’t rollover and let this take over my life. This is why I keep riding my bike, going to work, volunteering, and living life. But this isn’t easy. It may look simple but it’s not. Those of us who are chronically ill we choose to do all the things that “normal” people do because, we really have no other choice. We can’t wait for a cure or the next miracle drug. We can’t wish to wake up and be magically cured. We know that changing our diets and reducing our stress levels won’t cure us.

Chronically ill people have tried it all. We’ve drunk the green juice. We’ve given up meat and become vegans. We’ve tried resting. We’ve started meditating. We’re doing yoga. We’ve drunk the kool aid and it didn’t make a difference. Just like you would, we’ve tried it all. We’ve scoured the Internet for the latest research, we’ve bought all the books, we’ve tried all the diets, we’ve talked to the experts.

The fact is that there is no magical cure. The fact is that this is “not our fault”. There is nothing I could have done to prevent this. This is the way it is.

4 thoughts on “On Being Chronically Ill

  1. Vicki, this made me cry. I feel EVERY WORD OF THIS. The frustration. The knowing that you have NO CONTROL over your body. Despite how hard you try to figure out what is making you sick, there is no finding out. Because you aren’t doing anything to cause this. It isn’t eating red meat or grains or sugar. And taking turmeric and aloe vera and vitamin D and omega 3’s and eating grass fed and organic and doing yoga and meditating and whatever else you read is healthy is not going to fix you. At least, it isn’t fixing me.

    10 months on the Specific Carbohydrate Diet. I feel better enough to ride my bike consistently, and have even been trying to race. But I’ve been flaring very badly again and a scope last week at least cleared me of pre-cancer, but showed that my colon and rectum and even part of my small bowel are horribly inflamed. All I can say is thank God my fistulas and abcesses haven’t returned so I can ride again. I eat like a monk. I make everything I eat. No sugar, grains, starch, lactose, soy or anything processed have passed through my lips for the better part of a year, and now it looks like my grasping at this slim possibility of controlling the symptoms of this disease has failed.

    I am a healthy, fit, energetic, optimistic, athletic woman trapped in a diseased body and unable to heal myself though any food or medicine. It’s utter frustration. From reading this, I believe you know how I feel.

    • Rebecca, I definitely know how you feel. It is so frustrating to be doing all the “right” things and have nothing work and to not see any changes. You really are a role model and example of how to live a full life while being chronically ill. I wish the SCD was working 100 per cent for you. Keep smiling and reminding Crohn’s Disease that it’s not winning – you are.

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