I recently received an Email from one of my readers that both surprised me and warmed my heart.
Typically, I receive Emails from women (and a few men) who suffer from interstitial cystitis themselves; but once in a while, I hear from a husband or partner of a woman with IC.
I am always touched when this happens.
This man reached out to me to get some advice on how to better support his girlfriend who is really going through a tough time right now with her IC.
When you love someone, be it a partner, a sister, an uncle or a friend, you want them to be happy and healthy.
It can be incredibly difficult to watch someone you love suffer from a chronic health condition and often feelings of helplessness arise.
Today’s post is for all of the husbands, wives, boyfriends, girlfriends, moms, dads, siblings and friends out there who love someone who has interstitial cystitis and want to learn how to support them in the best way possible.
Here are 5 ways that you can support someone you love who has IC:
1) Give them your full presence, acceptance and reassurance
Experiencing extreme fatigue and pain day in and day out is not easy. It is downright terrifying.
Most of us are told that we will have IC for the rest of our lives and therefore we have no idea when and if the pain of the disease will end.
Although we can’t necessarily expect you to fully understand this, we need you to learn how to be fully present with us when we are in pain and accept us in that moment without trying to change us.
I know for myself, when I am feeling exhausted and depressed, I just need someone to hold me and listen to me. I don’t need someone to tell me to look on the bright side and to stay positive.
Learn how to listen to your loved one with IC without interrupting or trying to fix them. This is the acceptance piece. Try to accept them exactly how they are in that moment without trying to change them. Just be with them fully and open your heart to them as best you can.
Sometimes we want to shut down when we are around someone we love who is in intense pain. Try to stay with the uncomfortable feelings that might be coming up for you and stay present.
Often times you don’t even need to respond with words. Gestures like hugging and holding your loved one, stroking their hair and wiping their tears can provide a lot of comfort and safety in moments of fear and sadness.
For some, words of reassurance and acceptance can help them to feel safe and supported.
Here are some examples of what you can say when your loved one is really struggling and emotionally distraught:
“This is so hard for you. I’m sorry you are going through this.”
“I hear you. You are in so much pain right now. I’m here.”
“I love you.”
“You are safe.”
“We’re going to get through this together.”
2) Learn about interstitial cystitis
Interstitial cystitis is difficult to pronounce, and although learning and remembering how to say it correctly may mean a lot to your loved one who has IC, it isn’t enough.
I challenge you to do a bit of research on your own and learn about the many facets of IC.
Understanding what kinds of challenges that someone with IC faces on a daily basis will allow you to support them better.
For instance, when you really understand that IC involves frequent urination and I mean FREQUENT, you’ll fully get that we can’t sit in a car for hours at a time. It can be a painful and terribly uncomfortable experience.
If we do need to travel a fair distance by car, we will need to make several restroom stops. Offering to stop with care will reduce the likelihood of us feeling guilty and like we are being a nuisance.
Learn about the types of foods that we can and cannot eat. This varies from one person with IC to the next, so listen when we speak and do your best to remember the foods we do best and worst with.
My family continued to offer me wine even after I told them numerous times that I couldn’t tolerate it. I had to continue to decline and explain each time why it irritated me.
In hindsight, I didn’t have to re-explain each time, but I think I just wanted them to hear me and understand me. I would have felt much more supported if they just automatically poured me water and didn’t ask if I wanted the wine each time. It was also a constant reminder to me that I was no longer able to enjoy a glass of red wine – something I thoroughly enjoyed in the past.
3) Help your loved one with IC look for solutions
There’s always something new to learn and there are so many treatment options and ways of healing this disease. It can be a big job to do all the investigative work on your own.
Offer a helping hand when you can.
Help them look up ways they can promote greater healing through their diet and lifestyle, search out practitioners to work with that are familiar with IC and collect resources they need to heal.
Just be sure to do this in a sensitive manner and if they say that they don’t want your help, then respect it. When your partner is crying in your lap, it is probably not the best time to pull out a research paper on a new IC treatment option that you just found online.
4) Choose to validate your loved one with IC
One way to support your loved one with IC it to be sure that you are not making insensitive and invalidating remarks to them, such as, “it’s all in your head”, “the pain can’t be that bad”, or “just sleep it off and you’ll feel better in the morning.”
Choose to validate them instead.
Here are examples of validating statements – “I hear you. Is there something I can do right now that will help?”, “Let me grab the hot water bottle for you,” “Do you want to talk about it? I’m here to listen,” or “That’s so hard waking up during the night like that. You must be exhausted.”
It is also helpful to recognize how much effort you see your loved one putting into getting well and healing. Let them know that you see and appreciate how strong they are. Validating your loved one’s strength, determination and successes along the path are just as important as validating their pain.
5) Bring joy and humour in wherever possible
It can be easy to slip into a black hole of depression when you are experiencing chronic pain and discomfort.
Having someone by your side who can be light in the midst of this heaviness and potentially even make you crack a smile, or better yet, laugh hysterically, is truly a blessing.
If your loved one is feeling down in the dumps, you can offer to put on their favourite funny movie or TV show, or tell a silly joke if the timing seems right.
Laughing has been shown to increase endorphins in the brain, also known as our “feel good chemicals”.
Don’t forget about self-care
No doubt it can be mentally, emotionally and physically draining if you are the primary partner or caregiver of someone who is suffering with IC.
Remember, it is not your job to heal or fix your loved one, only to be there for them and support them to the best of your ability.
It’s important to take time for yourself to recharge and reconnect with your own goals, passions and dreams.
You cannot take care of anyone else if you are an empty vessel.
So really, the best thing you can do for your loved one with interstitial cystitis is take care of yourself well and learn to love and accept yourself unconditionally.
Know that you are doing the best you can and when you need to take a break to take care of yourself, that’s perfectly okay and necessary.
To my fellow IC warriors:
On a final note, for all of my fellow IC warriors, learn how to ask for what you need. I am still learning how to do this. It can be very frustrating for a partner to want to support you, but not know how.
If I am in a lot of emotional pain when my partner is there and can express my need to just be held, he is more than willing to do that for me. If I can’t express the need, he can feel helpless and frustrated.
We are all unique and feel supported in different ways. Learn how you feel best supported and then have a conversation with your partner about it. Each of you should feel safe expressing your needs and talking about how you can best support each other.
Now, it’s your turn! If you are a partner, spouse, sibling, or friend of someone with IC, I would love to hear about your triumphs and struggles with supporting your loved one.
If you are someone with IC, feel free to share how you feel best supported, or share a story of how amazingly supportive (or unsupportive) someone in your life is.
I really love reading articles about interstitial cystitis but everytime I’m reading a break into tears..I don’t know if that happens because I tried to be as strong as I can everyday.It’s been pretty hard for me I’ve been suffering for 4 years but I was diagnosed couple months ago.
Hi Araceli,
It’s completely normal and touching to me that you are moved to tears while reading the posts. It’s nothing to be ashamed of at all. I think that women and men who suffer from IC hold in a lot of their pain and try to hold up an image to the world that everything is okay to maintain a sense of normalcy and also to try and not let the illness define them.
I can’t imagine having symptoms for 4 years and not having a diagnosis during that time. It must have been very difficult.
I hope that the posts help in some way and I welcome you to sign up for my free course if you have not done so already. Here’s the link: http://healinginterstitialcystitis.com/sign-up/
Kristen
Great read , thank you.
It’s been nearly two years since I was diagnosed and I , along with my family and friends , am still learning every day how to better manage this debilitating illness. It took my doctors about 4 years to make a diagnosis as well . Although I still suffer from the many symptoms of IC , I find comfort in knowing what it is causing all this pain..
Hi Gina,
It’s unfortunate that it took so long to get a diagnosis, but it does sound like you have a great support system who is willing to learn with you and that’s incredible!
All the best,
Kristen
The best way I have been supported is my fiancé is my rock . I have hydrodistentions every two months and he takes care of our daughters and myself . He is very loving and I’m so grateful I have him. The worst thing was when my ex cheated and said I was broken and damaged and no one would ever want me. My fiances mom also claims that I’m not in that much pain and says things accusing me of being a junkie because I have to take narcotic pain meds . She’s a nurse and claims ic is not that painful.
Hi Miranda,
Your fiance sounds amazing! I’m glad you have him on your side.
It’s really too bad that his mother is not understanding and even critical of your situation. And that ex, well, let’s just say thank god that he is your ex and no longer in your life!
I wish you all the best and I hope you continue to enjoy my posts! If you haven’t signed up for the course yet (http://healinginterstitialcystitis.com/sign-up/), I recommend you do so and once you complete the course you will also get notified of new blog posts (usually weekly).
All the best,
Kristen
Is there anyway you could email me this link? I’d like to send it to my family but cannot figure out how to do so.
Thank you!!
Alison
Sure Alison, I will email it to you and then you can either forward the Email I send you to your family and friends, or copy and paste the link into a new Email and you can send it out. I recommend you copy and paste it into a new Email because if you forward it, it’s more likely to be marked as spam or junk mail on the receiving end.
I thought I had lost my best friend to I.C. but I kept the faith and prayed daily for you,we can get through this together. I love you honey
Your best friend is lucky to have you. 🙂
I am so depressed. I have had hydrodistentions, pelvic shock therapies, medications, bladder installations multiple times a week, and more. Nothing seems to help long term. With my diet I have good and bad days. I feel depressed because I am only in my lower 20s and I cant be intimate with my partner as much as I would like. I know he loves me and says its okay, I feel like its not okay. My self confidence is at like an all time low! Its not that I don’t want to be intimate, its that it hurts most all of the time. Nothing seems to help long term. The cysto/hydro helped for about a month but my uro wont keep redoing it. I am seeing a new uro at Vanderbilt research hospital hoping to find relief. Its been years I have been in pain and so tired. I work because I have no Choice. I try to explain the problem to family and the most common response is “we all have pain sometimes, you have to just deal with it” I have almost died of unrelated kidney problem that I struggle with along side of ic and I am just ready to feel better. I don’t want to live depressed, fatigued, and in pain forever. I go pee literally 20+ times a night and it hurts to hold!!! I want to see some light. I am having a very hard time emotionally and physically. I feel lost. These post help me alot because I know that other people have found things that help them. I just need help keeping my confidence up, and my emotions in check until I can get some longer term relief.
Hi Brittany,
I will send you a direct email.
Thanks,
Kristen
My best friend suffers from IC. It breaks my heart to see her in pain on a daily basis. She is the strongest person I know and is so determined to not let this disease stop her from doing anything, although it does. Thank you so much for your blog. It is helping me learn how to support her. I will never understand the physical and emotional pain of IC but by learning about it, I can understand what she is going through and support her as a friend. It’s a disease not many people take seriously, but it is very real and very debilitating. I hope more will read this blog and gain an understanding of IC. Thank you.
Hi Sarah,
You’re friend is so very lucky to have her in your life! Good for you for looking into how to support her better. 🙂
Kristen
Hi there my mum has been told she has ic after being in and out of hospital for the past few months She is in so much pain day and night it’s heart breaking to watch All she does is cry. Plz can anyone tell me how to help her x
Hi Leanne,
She will need to find a doctor who can help her reduce her pain first and then you can focus on incorporating natural methods for healing her body. Have you looked at the free course yet? Here is the link: http://healinginterstitialcystitis.com/sign-up/. Don’t give up!
Kristen
I also have IC, There is a Dr. Furr that I am going to that has already help me with this pain. He is a female Dr. But he also knows about this IC. He is on Gunbarrel Rd. In Chattanooga,Tn. I got a appt. Pretty fast. Just go to your search box and put his name in it. DR. ROBERT FURR. HE HAS DIFFERENT STUFF TO HELP YOU. FOR ONE HE KNOWS HOW YOU ARE HURTING. AND HE LISTENS TO YOU. PLEASE GO SEE HIM. I GO BACK IN OCT. AGAIN TO SEE HOW I AM DOING. I FIGURE OUT THAT TOMATOES HURT ME REAL BAD. I CAN’T HAVE ANY THING THAT HAS ACID IN IT, LIKE LEMONS, ORANGES,COKE, TEAS, NO CHOCOLATES, NOTHING SPICY, COFFEE. JUST WATER AND MILK IS ALL YOU CAN DRINK. That is just some of the stuff that can hurt your bladder. Go see somebody that can help you. I have Fibromyalgia , O A in all my joints, AND NOW THIS IC, SO I HAVE REALLY BEEN IN SOME MORE PAIN. He has helped me and my CHURCH FAMILY HAS PRAYED FOR ME AND LAY HANDS ON ME AND GOD….HE PLAYS A BIG PART IN THIS ALSO.
Let’s see where do I start? My fiance was diagnosed with IC about a year and a half ago . I have been by her side all this time . All the doctor appointments and ER visits I have went with her to are numerous. I have stayed awake with her on nights when she is crying because she was in so much pain ,I have helped her in the shower before she got a bath chair and yet I feel sometimes it is not enough. I love her a lot and long story short I vented out loud the other night to her and said some things I should not have said to her about her condition etc. and I feel really bad . Has anyone here said some things or have had things said to them by a loved one and how do you go on from this when you love them so much ? Any words of advice?