Hi there, my name is Laura, I am 28 years old. I look perfectly healthy (and just a few years ago I was) but now I am battling an invisible illness.
That's me! Just a few months ago. As you can see, I don't look ill. Just sleepy. :)
I have a bad case of a disease called Interstitial Cystitis
How I explain this to people not suffering is that it feels like I have a UTI, 24/7, and it is worsened by certain triggers. Including coffee, alcohol, citrus fruits, tomato, spicy foods, soy, and chocolate, oh and ALL processed foods. This is even worse for me because I am vegan, and relied on soy and fruits. Another complication is after switching to an IC friendly diet I realized I also have IBS, which is common in IC sufferers so now I have bowel issues too and have to cut out more foods, including legumes. At this point my vegan diet is very limited and becoming a struggle.
But that's besides the point. This is about veganism. The things is, even on my IC friendly diet I am still in pretty bad constant pain. It sometimes feels like I am peeing out battery acid and shards of glass. And the pain isn't the worst part. I'd say the worst part is the urgency. On a good day I pee 20 times, on a bad day I can pee up to 60 times. Or like, every 15 minutes. For me it gets much worse at night.
I now have to sleep with a large tupperware by my bed because in the 2 hours before bed/while trying to fall asleep I pee about 14 times
That is called nocturia. And is common in people with IC. Now, the main thing that makes this such a struggle is that IC is rare and very under-researched. It takes most people many years to even get diagnosed properly. I still need a cystoscopy before I can get any sort of meds. Which may take years. I have been repeatedly treated for a UTI before they realized I have no UTI, and then had every test under the sun for bladder issues aside from the cystoscopy because I didn't have insurance when this all started getting intolerable and the test is about $800.
So, feeling defeated I went home and have been struggling to cope with this for about 8 months. (I had bladder issues for the past 4 years but they were rather mild and I could ignore them so I had no idea I had IC) Finally, I hit a point where I had nowhere to live because I can't work a regular job, yet can't get on disability yet (if at all). A friend in MN offered to let me stay with them, a complete lifesaver. I didn't even realize at the time that this meant I would qualify for medicaid, which I do not in FL. Which means hope of finding some sort of relief.
For now, I am trying to deal with this myself, with supplements I have researched. Here is about half of the supplements I have to take daily
I have to take about 4-8 loradatine (claritin) a day just to stop the bladder spasms (which are made worse by movement) which leaves me groggy and tired. Considering I likely have fibro, I am already groggy every day so this makes me pretty non-functioning. On top of the pain, urgency, and being unable to move very much.
This is incredibly alienating
I have never felt so alone. Just a few years ago I was an active 26 year old. I was riding my bike, doing yoga, going for long power walks. I was able to engage in sex (it's too painful for me now....) I was able to go out and eat with friends, have a drink, go for a day at the beach. Now I sit in my room, on my computer, in pain, and trying not to let myself sink into a morbid depression over my limitations and my "new" life.
Today, when I logged onto to facebook it's "On this day" feature showed me pictures from my 5 mile bike ride I took to and from work every day.
So, I ended up laying in bed for about an hour, utterly depressed. I can't even ride a bike now. Period. It's horrible for the pelvic floor dysfunction that goes along with IC. So, I left my bike at my old apartment, to rust away, or be given to someone who can use it. I loved that bike. I loved riding that bike. I loved riding on those trails. I can hardly walk on those trails now because I would have to hide in bushes to pee every 15 minutes, where I may get arrested for indecent exposure.
This is my life now. And, sadly, this may be my life for many years as there is very little known about my disease.
I am holding out hope for some relief. But I have read enough stories from sufferers to know that, the simple fact is, I may not get relief, ever. Many women have been trying to find relief for 20, 30 years. And are still in my shoes. It can get very old hearing people tell me how I WILL get better, or how there's NO way this will be my life. I guess they just don't want to face the ugly fact of, No, I may not get better, and Yes this may be my life now. I understand that's hard to face, trust me. That is part of what makes living with this disease so isolating.
At this point, I have lost many of my friends. Especially when I am being good and not drinking EVER or eating ANY trigger foods. Then it seems nobody ever wants to hang out. What fun is that, right? Not to mention, I am sure it's a downer to hear about someone being unable to attend this, or do that due to pain. But, I can't help that, I AM in pain all the time and I can't do this or that. A few months ago my boyfriend was trying to "encourage" me to take motorcycle classes and it lead to a bit of an ugly situation as he just refused to accept that this wasn't something a person with severe IC can or should do. It was not a healthy amount of pushing myself, it would be disastrous. So, another thing I have to deal with is constantly trying to convince people of my limitations, because I LOOK healthy. Just last week I was explaining my disability to someone when they asked why I was moving and they said "Disabled? I just saw you walk?" -_-
Well, I don't think I have too much more to say on this. Aside from, if you have a friend suffering from a debilitating illness that you know nothing about. Look it up, research it, try to imagine life in their shoes and take their word for it if they say they can't do something, don't push them. Chances are, they wish they could do it just as much as you and a reminder of how they can't is only going to make them feel worse. </>
And if you are out there, living, struggling with an invisible illness. Here I am. You are not alone. There are many of us and we are alive. Keep on fighting.
(and maybe join some online support groups where you can freely vent to people who get it.)