Interstitial cystitis (IC), also known as painful bladder syndrome, is a chronic condition characterized by discomfort or pain in the bladder and pelvic region. Those who suffer from IC often experience significant challenges in their daily lives due to the persistent symptoms. If you have a loved one dealing with interstitial cystitis, you may wonder how you can support them effectively. Here are five meaningful ways to show your care and help them navigate life with IC:
1. Educate Yourself about Interstitial Cystitis:
One of the most important ways to support a loved one with interstitial cystitis is by educating yourself about the condition. Take the time to learn about the symptoms, triggers, and treatment options available. Understanding the challenges your loved one faces on a daily basis will not only show your empathy but also enable you to provide more meaningful support. Additionally, being knowledgeable about IC can help you advocate for your loved one in medical settings and provide valuable insights during discussions with healthcare providers.
Check out my blog, the IC You podcast, or ichelp.org for helpful information.
2. Be Empathetic and Understanding:
Living with interstitial cystitis can be physically and emotionally draining. It's essential to approach your loved one with empathy and understanding. Imagine you constantly felt like you had fire in your bladder or had the constant urge to pee...it would probably drive you crazy! Acknowledge their pain and struggles without judgment.
Be patient and attentive when they need to talk about their experiences or vent their frustrations. Sometimes, having a supportive listener can make a significant difference in how someone copes with their condition. Your compassion and empathy can help alleviate feelings of isolation and loneliness that often accompany chronic illnesses like IC.
3. Offer Practical Assistance:
Practical assistance can be invaluable for someone with interstitial cystitis, especially during flare-ups when symptoms are more severe. Offer to help with everyday tasks such as grocery shopping, cooking meals, or running errands. Be willing to accompany them to medical appointments or treatments if they need assistance or emotional support. Simple gestures like preparing a hot water bottle, bringing them a warm blanket, or offering to pick up their medication can go a long way in providing comfort and relief. By offering practical assistance, you demonstrate your commitment to easing their burden and improving their quality of life.
4. Modify Activities and Environments:
Living with interstitial cystitis often requires lifestyle modifications to manage symptoms effectively. Be willing to adapt activities and environments to accommodate your loved one's needs. For example, opt for low-impact exercises or activities that won't exacerbate their symptoms.
When planning outings or social gatherings, choose venues with easy access to restroom facilities and consider the availability of comfortable seating. Respect their boundaries and limitations, and avoid pressuring them to participate in activities that may trigger discomfort or pain. By being flexible and understanding, you can help create a supportive environment that promotes their well-being and minimizes stress.
5. Be a Source of Emotional Support:
Living with a chronic illness like interstitial cystitis can take a toll on one's emotional well-being. Be a source of emotional support for your loved one by offering encouragement, reassurance, and companionship. Let them know that you're there for them, no matter what. Encourage them to express their feelings and concerns openly, and validate their experiences without minimizing or dismissing them. Offer words of affirmation and positivity to boost their spirits during challenging times. Additionally, encourage them to seek professional support through therapy or support groups if needed. By providing emotional support, you can help your loved one cope more effectively with the emotional ups and downs of living with interstitial cystitis.
The Impact of Support on IC Warriors
I recently asked a group of IC Warriors who have a good support system what that looks like and means to them. Here are a few of the responses:
"Support for me regulates my nervous system. My husband helps me immensely and I am so appreciative. He helps with meal planning and cooking. He’s supportive and understanding even when it’s hard on him too. He encourages long walks and goes on grocery “dates” together. He reminds me when to take deep breaths when I am starting to get overwhelmed with my condition. My friends check in on me and make allowances when I have to cancel plans because they understand I have chronic pain. But it’s also so great to have friends to get together with and have quality time. It makes you feel more normal. My parents are very supportive and empathetic to my situation and they are also some of my biggest champions. I fully believe that support is crucial in my personal journey to remission from IC. Human connection is so important."
"I know my loved ones will never actually fully be able to understand since they don’t have IC themselves, but what’s important is that they TRY to understand and support. That is by not suggesting we go get bloody Mary’s multiple times(used to be one of my favs pre IC but not ready to go that crazy with testing lol) when I have told them I can’t have super acidic stuff and tomatoes. (This has happened with one of my friends) It’s important when I feel heard because this condition can be isolating. Definitely family and friends and partner doing their own IC research has meant a lot to me, making accommodations for me when they are cooking, or at events. Really shows a lot and makes me feel loved and supported."
"Having a supportive family has been crucial to my healing success. During my years of following the IC diet they were willing to eat just like I was for meals I prepared for everyone so that I didn’t have to cook twice. Anything I wanted to try they listened to me discuss it and supported me with whatever I was doing. At a particularly rough flare my husband searched out a support group on Facebook and signed up for it and found some helpful info. When we figured out that diet wasn’t my trigger but the nervous system was my husband encouraged me to find a program that helped address that. Once I found one they listened to the family and friends video with me."
"When I had my flares. My hubby would help me shower. Wash my hair. (We have ADA seats) he is so supportive and always asking if we go out if there is any citrus or spicy items. He always tastes my food before I eat it. He has come to learn how my level of spice is. With this it’s easier in case if I forget. He always has my back. I couldn’t ask for a better hubby. And he always reminds me to shower after we are intimate and take my pills to make sure I don’t get any uti. I just made 2 years no flares!!!!"
"When I complain about being in pain constantly I'll apologize to my husband and tell him I feel like all I do is complain (I have other painful issues besides IC). It is nice that he can empathize and says he understands what it is like to be in pain constantly and how it can alter your mood and personality and then he will tell me that we are in this together and we will figure it out. I love that he is so patient."
"My partner comes into the bathroom with me when I’m having painful urination, so he can keep me company and rub my back. Sometimes he’ll need to use the restroom as well, so in those times I say 'I’m sorry I’m taking so long just sitting here, I just need to wait for the pain to stop' and he always replies 'it’s okay, take your time, I’m sorry you’re hurting so much'"
"I have the best support. My husband gives me space when it hurts, and expects nothing of me except to rest no matter how long and my sons are the same way. If there's a way to comfort me it's kind words and they always make sure I have everything I need and they have always been like this. I have chronic pancreatitis and have had it since 2010. So they spoil me. They let me know they love me. It helps that my husband really likes and trusts my urologist. With my hubby and sons, I can't ask for more."
In conclusion, supporting a loved one with interstitial cystitis requires empathy, understanding, and practical assistance. By educating yourself about the condition, being empathetic and understanding, offering practical assistance, modifying activities and environments, and providing emotional support, you can make a meaningful difference in their lives. Your support and compassion can empower them to navigate the challenges of interstitial cystitis with greater resilience and hope.
BONUS VIDEO:
Below, you'll find a video that will help you understand what was written in this article on a much larger scale. Watching this short video will show your IC Warrior that you care and want to support them.