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.
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.