It was my 15th trip to the Emergency Room that month. The ER doctor recognized me. He took the usual blood and urine samples as I waited in the room in pain. When he returned he had a packet of papers that he printed out.
“I have a suspicion you have interstitial cystitis,” he said and handed me the stack of papers. “You should see a urologist to get the official diagnosis.”
I was excited to have an answer to my pain and peeing blood, but when I looked up the disease online I was terrified. The forums were filled with people who had to leave their jobs because the pain distracted them to the point of madness. This was a chronic disease that had no known cure. It was described as worse than cancer pain and the lifestyle was compared to people on kidney dialysis.
When the second urologist confirmed the diagnosis, I felt disconnected from reality. My active lifestyle and my job had been put on hold while I had been in pain. Now, I knew I could never go back to my old life. Pills were prescribed by the handful. Every doctor that I saw had a new restriction for me: don’t walk too much, stress will cause more pain, follow a special diet, and take more pills.
I had to leave my job that I had worked so hard to get. I stayed at home in a hospital bed set up in the living room. The pain worsened and I wasn’t even able to walk up the stairs on most days. I visited over 54 doctors, naturopaths, acupuncturists, chiropractors, physical therapists, masseuses, and specialists. I was determined to find a cure and get back to my old lifestyle. I was only 30 years old.
After 3 years of bedrest, I am finally able to live a somewhat normal life. I still have interstitial cystitis, but I have learned how to manage it so that I can do basic activities such as writing, cleaning, running errands, and seeing friends. I am not the extreme athlete that I was before I got sick, I no longer want to be a City Manager, and I am finally learning what self-care really is.
If you have been diagnosed with a chronic disease or any condition that causes you to change and manage your new life, you might find these tips healthier for helping you face it.
1. Reach out to friends & family.
I hid my discomfort for so long that when I finally approached my friends and family, they were surprised to know how sick I was. But after I educated them, they helped with my emotional and everyday needs. This is a great practice in being vulnerable.
2. Get creative.
With a new diagnosis you might face restrictions, such as no bending or lifting. I did the dishes by hand because I couldn’t bend to load the dishwasher. I used clothespins on my seatbelt in the car so that the belt couldn’t press up against my sore bladder. I came up with new recipes based on my diet restrictions.
3. Create a team of practitioners.
If you can, get the team to talk to each other. You are in charge of your health, but having a knowledgeable group of practitioners can really help you make informed decisions.
4. Acknowledge & mourn the loss of your previous life, but embrace the new you.
Learn to embrace the little things in your new life. You are a new person now, with new restrictions, and it's okay to mourn what you lost, but find a little happiness in where you are at. I still enjoy a cup of tea, fuzzy blanket, and a good movie.
Lifestyle changes are never easy, even if it is not a diagnosis. Divorce, accidents, and financial loss can cause these changes as well. Accept that change will happen. Some change is good. Some change is considered bad and more difficult. Change is how we grow. I challenge myself every day to accept the new me that day. Sometimes that me is in pain, sometimes that me is able to go for a relaxing walk. Acceptance in the moment is the key to survival.
