In the Summer of 2013 my life quickly changed. I woke up one morning with severe pain that I could only assume was the worst UTI in the world. Unfortunately that was only the start of the pain, that I would soon come to learn, I would have for the rest of my life. After many trips to the doctor, countless tests and weeks of antibiotics that did nothing, I was finally diagnosed with Interstitial Cystitis. Interstitial Cystitis (IC for short) is a chronic inflammation of the bladder that currently has no cure. Pretty much, in layman’s terms, IC causes symptoms that mimic a bladder infection although no bacteria is found. Urgency, frequency, burning and pain all coincide with IC. It can cause pain in the abdomen, lower back, kidneys, upper thighs and can make it difficult to urinate, exercise, sit for long periods of time or even have sex. I have had IC for a little over 2 years now and over the course of that time I have learned a great deal about myself and about dealing with a chronic illness. One thing I have learned and wanted to share, is that chronic illness changes you. It doesn’t just change you in one way though. It changes every single aspect of your life. So here is the bad, the good, and the in between.
All the ugly things that come with having a chronic illness…and yes it may seem like there are a ton of them but I promise if you get through reading the bad, you will understand the good so much better.
Hair: Something I never expected in having a chronic illness is that my hair would fall out. Currently the only FDA approved medication created strictly for IC is Elmiron. Unfortunately, along with a slew of of horrible side effects, Elmiron is also a hit or miss in terms of working.
The thing with Elmiron is: 1. It takes at least 6 months to a year to even begin to see results (if it even works for you at all that is), 2. It is EXPENSIVE. Most insurance companies do not cover it and the ones that do cover it, cover very little.Our insurance company covers generic medications 100% and covers a portion of the cost for medications that are name brand and have no generic equivalent. Elmiron doesn’t have a generic so even with our insurance our cost for this medication was still $180 per month…so yep we paid almost $600 for 3 months of a medication that did not work, made me sicker, and made me lose my hair. 2. Your liver could get destroyed in the process (frequent testing to make sure it is functioning properly is needed while on Elmiron) and 3. Your hair could fall out…and no I don’t mean just a little bit. I mean, you lose clumps of hair every time you shower, brush your hair or even touch it. You will get bald spots and the hair that does remain will thin out incredibly. The photo below shows the results of me being on Elmiron for only 3 months.
I actually had to cut off most of my hair to get it to look even remotely healthy and it took over a year for my hair to start to grow back and the bald spots to disappear. Even now, years later my hair is still not as healthy and full as it once was. Elmiron completely ruined my hair.
Medication Side Effects: Then we have all the side effects from the different types of medications. For me, that would be Elavil. Elavil is the only medication that actually made any type of difference in my IC. Unfortunately you can not take this medication while you are trying to conceive, while pregnant, or while breastfeeding as it can cause abnormalities in the fetus. Once Colby and I decided we wanted to start our family, I stopped taking Elavil in order to give it adequate time to leave my system and to prepare for when we were ready to start trying for our family. Although Elavil helped my IC the side effects from it were not fun. When you first start Elavil and every time you increase your dosage, it drains your body. You have never felt fatigue until you have taken Elavil. My body felt like it was hit with a ton of bricks, like every muscle ached, and it felt like I had the worst flu I have ever had. Waking up in the morning after taking a dosage of Elavil brought about a whole new meaning to tired. I literally had to drag myself out of bed I was so exhausted. I wanted (and could) sleep for hours and yet I would still feel tired. Luckily that does pass after your body becomes used to the medication. Another medication I was on was for pain, two different kinds. When used together I had extreme headaches. When taken by itself I had the most vivid terrifying dreams. Dreams where you could not tell if they were real or not and if you were awake. The dreams themselves were terrifying, horrible dreams, that as hard as I try I could not wake up from. I remember countless nights upon wakening from one of these dreams and feeling so scared. The dreams were so bad I did not want to go back to sleep in fear of having another one. Never in my life have I had those type of dreams.
Weight Gain: I knew when I started taking Elavil that the biggest side effect was weight gain. Most who take it gain about 20-30lbs within the first year. Elavil makes you exhausted so you just want to sleep (ie. less active) and it increases your appetite to the point where you never feel full/satisfie (ie. you eat more). I gained 15lbs while on Elavil. I went from being toned and 110lbs to having loose, jiggly skin and 125lbs. In the photos below you can see the difference in my face, which is fuller, and my arms and stomach as well. I clearly gained weight while on this medication. Still to this day I don’t feel comfortable with the way my body looks.
Left: Just starting to take Elavil…Right: After being on Elavil (you can quite easily notice the weight gain)
Restrictions: Restrictions come in all shapes and sizes. While diet doesn’t play a crucial part in my IC and what triggers a flare, it does play a small part. For some with IC, food and diet is a huge trigger while others it seems to be mild or not affect them at all. For me, I can have a soda or a candy bar or even tomato based products BUT I need to restrict how much I consume. A soda once or twice a week is OK. Pasta with a red sauce once or twice a week is OK. But I could never have multiple sodas in one day. Anything after 2 sodas in a 24hr period and my bladder becomes my enemy…I learned the hard way. It is all about trial and error. While I have to restrict my food some, I am at least thankful that I haven’t have to restrict it a ton. Another restriction is how much exercise I can do and the type of exercises I can handle. No jumping jacks for this lady, ouch! With IC the type of work I can do is restricted, the amount of walking, running, sitting and traveling have all been faced with restrictions. I never thought I would have to plan a vacation around where there are bathrooms. This not only restricts how far we can drive at one time, but also the routes we take and the places we visit.
Intimacy: I’m not going to go into too much detail with this one but I will say having a chronic illness, like IC definitely affects intimacy. While it is still possible to be intimate with your partner, it does take work, patience, and tons of communication. While this area of our relationship has changed, it has not gone away. We’re young, we’re creative, and we find ways to work around it.
Spontaneity: The word spontaneous is just not in my vocabulary. In having IC, I never know how I am going to feel. I can feel fine one minuter and the next hour be in pain. My pain level changes not only month to month, but week to week, day to day, and sometimes even hour to hour. I have had times where I wake up feeling OK and by dinner time I am in so much pain all I want to do is cuddle up with my heating pad and some pyridium. This makes it hard to be spontaneous. I can’t just jump in the car for a spur of the moment trip. If I am going on a trip, I need to bring my pain medication, heating pad, pillow to sit on, wear comfy clothes, locate restrooms along the route and so on. I am a huge planner to begin with, but with IC, it is even more important to plan. Being spontaneous just doesn’t work anymore.
Depression & Anger: Depression is a huge one when it comes to chronic illnesses. No one ever tells you how lonely, isolating, and frustrating it is. When I was first diagnosed, I was depressed. I remember crying a lot and I remember asking Colby why this happened and how was I going to live the rest of my life like this. During this time my symptoms were at their worst and my pain was off the chart. I thought I was going to feel like that forever and during those moments I was very upset and angry. I was angry that my body had betrayed me once again. I was angry that I was in my 20’s and had my whole life ahead of me, only to be dealt this deck of cards. I remember thinking it wasn’t fair and that if I had to have IC why couldn’t I have gotten it when I was older and after I had kids. I was also sad…not only for myself but also for my husband. I was sad he now had a wife who couldn’t do things she used to. A wife who had to cancel plans and stay home instead of going out because she was literally peeing every 5 minutes and it was impossible to not be near a restroom. I was sad that we were in our 20’s and felt like everything we should be doing we couldn’t anymore. I was angry and sad that our intimacy had to change, especially at such a young age. The first 6 months of my diagnosis was a really hard time on me, both emotionally and physically. During this time Colby constantly reassured me that it was OK and that he wasn’t sad or angry at what was going on but just wanted me to feel better and wished I wasn’t in pain. As much as I knew he was telling the truth and not just trying to make me feel better, it was still hard not to let all the negative thoughts creep into my mind…especially at night when it was hard to fall asleep.
Judgment & Doubt: This is probably one of the hardest things to deal with. It is already so difficult to open up to others about IC because, lets be honest, it is an awkward and embarrassing problem. It’s not like telling someone you have a cold. Telling your friends, family, and even co-workers that you have IC is hard and puts you in a vulnerable position. IC deals with your most intimate parts and who wants to tell someone that it burns every time they use the restroom or that they have to pee 50 times a day? Interstitial Cystitis is also known as an invisible condition….it’s not the same as having a broken arm. IC isn’t visible to those around us and because of that sometimes people don’t always believe you are sick. If you don’t look sick than surely you aren’t sick. So others doubt the existence of your condition. Some may even think you are faking it to try and gain sympathy or attention. Or maybe they do believe you are sick but judge you for it. They judge you for how many times you need to use the restroom, they judge you for all the things you can’t do, they judge you because you cancel at the last minute due to a flair. It hurts to be doubted and judged. Dealing with daily pain is hard and stressful enough…you shouldn’t have to constantly convince others that you are in fact sick or constantly explain why you can’t always do something.
Yes there are a few good things about having a chronic illness. Although no one wishes they had one, it does teach you a thing or two along the way.
It makes you a stronger person. When you are dealing with pain on a pretty consistent basis and dealing with others who doubt you or are upset by the things you can no longer do, you learn to be a stronger person. You really don’t have any other choice, you have to be strong. You can’t give up on yourself or on life just because of your illness.
Be Your Own Advocate. Having IC has taught me that I have to stand up for myself and my health. I need to be my own advocate. If you don’t agree with what a doctor is telling you or you feel they aren’t taking you serious, you need to stand up for yourself. This is your health you are talking about. If a doctor won’t listen, find one that will. Sometimes those of us with chronic conditions need to take matters into our own hands, do our own research and advocate certain treatments for ourselves. For instance, I wanted to find something to help the spasms caused by my pelvic floor muscles tightening, making intimacy difficult. After reading IC forums and talking to other women with the same condition, I learned about the use of vaginal Valium. I brought the idea and information to my next appointment and asked my doctor about it. Although she had never heard of it, she promised to do some research on it and get back to me so we could decide if it would be something that would work for me. If I wouldn’t have been my own advocate and stood up for myself and my health, this treatment might not have ever been brought up.
You appreciate each and every day. Now I’m not saying that you can’t appreciate every day if you don’t have a chronic illness but I know that in having one I appreciate each and every day so much more than I did before. On days that I feel “good” and I am able to go for a hike or go into town I appreciate it so much more. It becomes very depressing not being able to do the things you love because you are in pain. So when I am not in pain, or my pain level is low, I take advantage of it. I appreciate the sun in my face, holding hands with my husband while we hike by the waterfalls. I appreciate every day that I feel even remotely good. Despite the fact that I may not feel 100% great, in that moment, I feel better than some other time in my life. I appreciate the days my pain is a 5 instead of a 7…and I savor the days when my pain is a 2.
You don’t take things for granted. I don’t take anything for granted…that includes my husband, the fact I don’t have to work, and my health in general. My husband works hard for us and because of this, I am able to stay home. I know many people with chronic illnesses don’t have this luxury and yes I consider staying home a luxury. I don’t take situation for granted. I am beyond blessed that when I am in a flare I don’t have to deal with a boss breathing down my neck about a deadline, or co workers wondering why I keep leaving to go to the restroom. I don’t have to worry about what I am going to wear to work that is professional looking but doesn’t put pressure on my bladder. My husband is a huge support when it comes to my IC and I don’t take his patience and understanding for granted. Not all men would stay with someone who has a chronic illness that affects their daily lives. I have read countless forums posts where women talk about how the men in their lives divorced them and told them they couldn’t handle them being sick all the time and simply up and left. So the fact that my husband not only has stayed with me through my diagnosis, but also has been a huge advocate himself for my health and helps me in any way he can when I am having a bad day is something I don’t take for granted. Not only that but the fact that he understands my illness, has taken time to research it himself, and is always understanding and works hard to ensure I have the ability to continue to stay home if I wish/need. Not everyone has that and so I definitely do not take it for granted.
Yours relationships become stronger. Many of the things I said above can be applied here as well. My relationship with my husband has actually grown stronger since finding out I have IC. It has proven we are a great team and work together to overcome any obstacles we may face. I can 100% understand why some couples divorce when on spouse is diagnosed with a chronic illness. It does put strain on your relationship and tests to see how strong it is. One spouse is always going to have a bit of a heavier load than the other and their is a lot of unknowns that come with it. It’s hard to make plans for a vacation, or a night out with friends if you never know how the other person is going to be feeling at that time. Having to watch a spouse be in pain can also be difficult. No one wants to see someone they love in pain. With all that being said, it can bring you closer and for us, it has.
THE IN BETWEEN
The there are some things, that while not great, not bad either. These are more just things I have realized along the way and adapted to. There is good and bad in these items.
A new kind of normal. Although I wish my body did everything it was supposed to and behaved like everyone else’s, that just isn’t the case. But that is OK. I have learned to accept what I can and can not do. I have learned my limits and restrictions and when I stick to them, I can do OK. I have a new normal now and while it might not be perfect and it might be different from others, this is what I know. The chances of going back to how I was before IC is pretty slim unless someone finds a cure. (anyone want to get on that lol?) I honestly can’t remember half the time what it felt like to not have IC anymore. I have been dealing with this for 2 years now and this is what I am used to and what I know. While most people don’t use the restroom 20+ times a day, to me that is normal. I think if I started going only 5 or 6 times a day I would start to worry and think something is wrong haha
Accepting the unknown. I have no idea how my IC is going to affect my future and my life. I have no idea how a pregnancy is going to go with having IC or how raising children and being a parent is going to be with this condition. And I would lie if I said that isn’t a scary thought. It is very scary to not know these things. I often wonder, will I still be able to be a good parent, will I be able to travel later in life, will I be able to live the life I want to live. One thing I have learned is that you have to just accept the unknown. Accept the fact that there is only so much you can control and trust that everything else will fall into place.
Do you have a chronic illness? What are some of your good, bad, and in betweens?