Interstitial Cystitis - A Disease So Horrible You Can't Sleep

by Annikki Hird
(Cincinnati)

I have a disease called interstitial cystitis (IC). This is a bladder condition which is not only painful but causes urinary frequency and urgency which persists both day and night. Nocturia, what they call urination that happens at night when you are trying to sleep, causes insomnia. IC patients will have to get up even 8 times a night or more.

Information on the disease:
http://www.ichelp.org/Page.aspx?pid=327

About its effect on sleep:
http://www.ichelp.org/Page.aspx?pid=417

This disease is simply the most horrible thing you can have happen to you. I'm in too much pain to sleep most of the time. There is NEVER any empathy for the lack of sleep the disease creates. I don't know about other people but I have severe IC and I've experienced enough lack of sleep to have serious involuntary muscle movement, hand tremors, slurred speech and to appear crazy or out of sorts.

I never hallucinated with lack of sleep and am still me with it save for that I feel so bad that it is indescribable. What is far worse I find is the utter lack of empathy and willingness for people to judge me on how I am the day I didn't get sleep--permanently. If you appear abnormal at any time, even if it is from something anyone can go through, which is lack of sleep, you are permanently labeled and nothing changes people's opinions. Period.

I'm homeless now because of this. Every story I hear about sleep debt online seems to entail people losing everything. I have. Worse, I have to sleep with a catheter in that needs to stay sterile and cannot while I'm homeless.

I graduated from college, was on the deans list regularly and have done much more but I am no longer considered human or sentient by most people I know because of how I appear when sleep deprived, and nothing seems to change it.

A Note From Kevin

Dear Annikki,

Thanks so much for your heartfelt message. Your sorrows and your frustrations pour out of your words, and I hope they find eyes who can relate or empathize with them on this site.

This is the first time for me hearing of interstitial cystitis, but I wonder with its devastating effects on sleep, as you point out, if it's well known in the professional sleep circle. I'll try to mention it around my teachers and fellow students next time I'm at school in September and see what comes of it. Do you know if it is a well-known condition within the field of sleep medicine?

For me, a very interesting and very true part of your message struck me when you highlighted the judgments and lack of empathy other people have towards you when you are in states of severe sleep deprivation. Your experience with this is clearly very extreme, but the same idea can be applied to all sorts of instances of sleep deprivation--from the everyday Joe missing out on a couple nights of sleep to the chronic difficulty sleeping you experience.

Whatever the level may be, when we go throughout our day we do so without others being cognizant of how we slept the night before (or the days, months and years leading up to that day). All others can see is what we present to them on the outside--our facade of actions--not the sleep-deprived fog we may feel inside. And as a result, judgments are made attributing actions directly to our personality, even though we may not have made those same actions were we not sleep deprived.

For most of us, we are able to combat this simply by catching up on sleep for a few nights. For you unfortunately it seems it has not been that easy. Annikki, where do you go from here? Do you have a game plan of how you are going to combat IC as you push on into the future? How combat-able is it and what do you need to do so?

Thanks again so much for sharing a bit of your story Annikki. I'd love to hear more of your thoughts here whenever you'd like to share them.

All the best,

Kevin

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