It is so important to remember that suffering with an invisible illness, does not make you an invisible person. On the face of it, there is a part of society that are met with this challenging adjustment in the shadows; an incredibly strong group of people. In the height of it all there are life changing experiences, changes of values, perspectives, remedies, soothing techniques and stories to tell. The looming feeling of grief that you experience, is not going to be forever because every single day is a fresh beginning; however you have to deal with it. If you have a bad day, being here is enough, it really is because the beauty of the good days will sweep that gloom away. Please do not judge for people’s journey, for they are all individual.
Your voice is one of the most powerful tools you have, and with this journey comes wisdom to share. This page provides a platform for that voice.
Ive had urinary problems for years... Just going more than most, waking up at night. About mid 2019 the burning started and within a week it was unbearable and I was going to the ER with what i assumed was a UTI ... just googling my symptoms. I've had problems with the immune system for years; including multiple battles with strepsis, sicknesses every other month with something different, uncontrollable acid reflux. The doctors are thinking it was an auto immune reponse that brought my IC on so quick. My labs come back fine, so now I'm going to take all of my symptoms hopefully to UC Davis to see whats causing all of this. I saw my urologist whoseems to think there's a root cause also. He said hes treated only one other male for IC, and hes been in the practice for 18 years. Guess its that rare for men.
Dan E - 37
Over the years I have had recurring problems with urinary tract infections, but I never thought much of it because I have never been in the best of health. Last September, my problems with frequent urination began worsening, and I started noticing that it would come usually only in small amounts even when it felt like my bladder was going to burst. Not to mention that urinating was painful, and the small frames of time when my bladder was apparently filling back up were even more painful, so I begun urinating even more to temporarily relieve the pain. My primary care physician would prescribe me medication for urinary tract infections and it never helped. I knew something was wrong. Sometimes my problems are worse at night, but lately they have been even worse or just as severe in the daytime. Sometimes I go as many times as forty times in one day, or in one night. I didn’t know what IC was until I saw it mentioned somewhere while I was reading about one of the medications I take for depression and someone said that particular medication was making their interstitial cystitis worse. God gave me this feeling that I needed to research that condition, and sure enough, when I researched it, I discovered that it explained my problems with pain and frequent urination. I felt so much relief knowing that my condition had a name and that I wasn’t alone. I went to my OB/GYN, who referred me to a urologist. I have my first appointment with the urologist in October. God has given me hope that I will someday find relief for my condition. My visit with the urologist in October will be my starting point!
Rachel F - 23
"Since September is Interstitial Cystitis awareness month I feel I should share what it is like to have this condition. I went to the ER today and had the exact experience that makes me not want to go to the doctor anymore. The nurse looks at my list of medications and exclaims “Oh! Your medication list is so long, you’re too young to be taking that many medications!” I explain that I have both IC and bipolar disorder and that’s what my medications are for. Then I get the questions on the medicine I take, yes it's very painful. On top of that I have my pain management doctor telling me the same thing that he can’t justify giving me the meds I’m getting anymore simply because I’m “so young”. My IC started at age 21. I’m 27 now... What is this bizarre perception that people have, that just because you’re not elderly it’s not possible to be seriously ill? It really upsets me because it absolutely sucks to be this young and chronically ill and people act like it’s unimportant or unbelievable. Imagine being 21 and slowly realizing that the rest of your life is most likely going to be filled with pain and suffering and not only that but people aren’t going to help you or believe you because you’re “too young to be sick”. It needs to be brought to peoples attention that you don’t need to be old to have bad health!
Amy M - 27
I was 18 when my IC really started to show symptoms. I suffered, and still do, from depression, anxiety, and PTSD. That was diagnosed before my condition. It's been a journey. I spent the first three years seeing several urologists and being misdiagnosed and treated for physical issues that I did not have just to see if it helped. It did not. I kept being tested and tested and told that my body was perfectly fine. All the pain and the frequency was being made up by my brain and I needed to see a psychiatrist. After those three years of being told by medical professionals that my body was lying to me, I found one who actually saw what was going on. He had trial treatments and it took 4 more years to get my life together and find something that worked for me. I'm 32 now. I still struggle and some days are far worse than others, but I know what I have. I can name it, and I can fight against something with a name. I am in a few support groups and it kills me to still see people who are experiencing the same things I did. This pain is not in your head. It is not made up. Stress can make it much worse. Find the name you need to fight, and fight. The war might never end, but you can learn and change to live a life again.
Michael C - 32
What does an autoimmune illness look like? It looks like me, Tasha Williams. My journey started when I was very young. I was 24 years old, married with two small children, working and going to school at the time. From the outside looking in, you could say I was “living the life”, but that was far from the truth. What people didn’t see is that I was having a battle within my body that kept me in pain almost every single day. I had been to multiple doctors to figure out what was wrong with me and had multiple surgeries with no relief. At that point I started thinking well they haven't found anything it must be all in my head. Throughout this time, I was dealing with sleepless nights trying to be a wife and a mother of two small toddlers that couldn't understand why momma was crying and so exhausted. There were times that I thought about just ending my life because it felt like the pain would never end. Even writing about this, has me worried that people may think differently of me for even entertaining the thought of leaving my family behind. After many years of not getting answers from different doctors and having a hysterectomy at the age of 30 I still had no relief. So I began to research different gynecologist and I finally found a doctor that could help me and was able to diagnose what I had been dealing with for so long. After many tests he told me what I was experiencing was Interstitial Cystitis and my first reaction was “WHAT IS THAT? DID YOU JUST MAKE THAT UP?” I was relieved to know we found out what was wrong, but also very worried because I didn't know what this journey was going to be for me. As I continued to walk out this journey, I’ll admit there were days where this illness took the life out of me. I eventually had to stop working because of the effects it had on me mentally and physically. During this time my daughter began to go through a mental crisis. So in the midst of dealing with my own healing, I was also trying to be strong for my daughter. My biggest goal everyday was to be stress free because stress makes my illness worse. I would continue to cry out “God why me?” I just did not understand why I had to experience this. Not working and lack of full understanding of my illness took such a toll on me, that it drove me into a very depressive state. One evening, as I found myself crying out “Why me Lord?”, God came to me in a dream. He reminded me that He gives His strongest battles to those He knows will use it wisely and for His sake. If it wasn't for my faith and my praying family I really believe I would have ended it all. Now I see my experience as a way to bring awareness to this illness and let people know that you can get through it. I know it's hard, but no matter what you are going through, you can survive like I did. Be that voice for people that may not have the voice that you were blessed with. I pray this inspires somebody to never give up, to hold on to your faith, and be that voice for someone that may feel they don't have one.