I’m going to talk about a topic that I’ve never written about and I barely ever bring up to people, but that has impacted my life for some time. A chronic disease “is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.”
I am lucky enough to have not one, but three chronic diseases. I don’t know what caused them and there is no cure to get rid of them. If you suffer from a chronic disease, you understand that it is taboo to talk about it, and you rarely are able to get relief from it. There is nothing worse than the feeling when a health issue comes up and you go to a doctor and get test after test, only to discover they have no answers for you, no quick solutions, and all they can suggest is lifestyle changes or diets to ease the issue.
My chronic diseases are not life threatening, but they do threaten my quality of life. Ever since I was 18 years old, I started having issues with my bladder. I had to pee constantly. I went to the college health center once a month thinking I had a UTI, only to find out I didn’t. Finally, a Urologist diagnosed me with Interstitial Cystitis or painful bladder syndrome. This chronic disease causes frequency in urination, painful spasms in the bladder, and the illusion that you always have an infection. They have no idea what causes it, but 3.3 million woman in the U.S. suffer from it. Most of us don’t talk about it though, we just quietly suffer.
Sometimes, I am woken up 8-10 times in the night by my bladder pain and need to urinate. This means my sleep is disrupted constantly. I can’t remember the last time I slept through the night. You can imagine how this impacts my well-being. I am constantly fatigued and have a hard time getting through the work day. I rarely have energy. I hate to complain about it though. I don’t want to sound like a broken record, every day complaining about my lack of sleep and my bladder. So, I silently suffer, like the other 3.3 million women out there. I’ve given up on going to doctors, because nothing they’ve suggested has worked for me. I’ve accepted that this is my life and I just have to manage it as best I can.
Six years ago, I decided to move to Oregon for Grad school. Whether it was the stress, or a change in my body chemistry, I started having chronic stomach aches and an inability to digest foods properly. I went to a GI doctor. I got every test in the book. I tried eliminating gluten and dairy. Nothing worked. They settled on naming it IBS (Irritable Bowl Syndrome). This chronic disease in particular is hard to talk about. No one wants to think about what happened with people’s digestive systems or the amount of times they go to the bathroom. But it happens and it affects so many people, who never talk about it. I never tell my friends that I’m suffering or that dinner didn’t sit well. I just go about my life, pretending I’m normal. I’ve given up on seeing doctors for this issue as well. It just doesn’t feel reassuring to get a ton more tests done to have inconclusive results and no answers. So, I just accept this condition again as a part of my daily life and I silently deal with its affect on my happiness and well being.
Five years ago, I started having a lot of strange hair growth and abnormal periods. I went to the college nurse and told her I thought I had Polycystic Ovarian Syndrome. She said there was no way, because I’m not obese and most women are over weight that have it. I insisted she test me. Low and behold the results came back confirming my diagnosis. This chronic disease affects a woman’s ability to ovulate, because her body produces an excess of the male hormone androgen and inhibits the body’s ability to release the eggs. It can cause male pattern baldness, abnormal hair growth, abnormal periods, lack of ovulation, cysts on the ovaries, and infertility and weight gain. I knew I was in for a treat with this one.
At first, my doctor put me on a ton of prescriptions to manage the symptoms. My body felt overloaded and I had issues with low blood pressure and low blood sugar. I started fainting often and feel light headed. A part of PCOS is having an insulin resistance, which means your body can’t process sugar properly so it turns it into fat. The pills I was put on for the insulin resistance were making my blood sugar too low, so I had to work extra hard to keep it up. I eventually went off everything but the birth control and now I feel a lot better. I do worry that when I try to have children one day, I will have a hard time. I am lucky though that I am a rare case and I don’t suffer from the insulin resistance as badly as others. I am not over weight and that will make it easier.
Normally, I wouldn’t air all these issues to the world, but lately I’ve realized how much people with chronic illness are forced to hide their issues from the world. No one wants to hear about them, they make people uncomfortable, and oftentimes they can be embarrassing for the sufferer. I wish it didn’t have to be that way. I don’t want to complain constantly or make people feel bad for me, but I also don’t want to feel stigmatized by my illnesses. I have managed to live a pretty happy life and not let these issues hold me back. I still travel, and hike, and exercise, and dance, and live normally. But this doesn’t mean I’m not always suffering in secret and hoping no one notices.
It just goes to show you, how many strong people there are out there putting on a facade for everyone, while they suffer in private. Don’t judge these people. Don’t laugh if you find out. Do you know how hard it is to keep smiling, when you never sleep, or feel constantly sick, or are in constant pain, but you know it won’t end and there is no cure in sight? It is really tough. I know first hand that I can’t let it get me down, but I will always have a diminished quality of life that no one knows about. I will of course continue to smile and laugh at your jokes and try to enjoy life to the fullest, but I will unfortunately never have relief from my issues. If you take anything away from this, please remember this: if you have a chronic illness – you are not alone and you are so strong for continuing to live your life despite it. If you don’t have a chronic illness- please be sympathetic to those who do and never make light of their experience. Count yourself lucky!!