Do you know somebody with Interstitial Cystitis?
If you know someone with Interstitial Cystitis and you are reading for education or understanding, then you being here is a significantly character defining step. The interest and attention on the subject will be appreciated without doubt.
I am going to try to initiate an understanding, a way to elaborate on how it feels to have Interstitial Cystitis. The first step is to compare the feeling from my perspective as best I can. With cuts and blisters on the bladder wall, the acidity of urine can reach through to the nerves and can be between a pH of 4.5 to 8.0 as standard. Analogically, it could be compared to pouring white vinegar onto a palm of papercuts of paper cuts (but hot and on the inside of your body without any quick relief access!). The inflammation from the immune system, feels like that bloating feeling you get from eating enough food to throw up (don't act like you don't know the feeling!). Though with IC, instead of being just below your rib cage, it is on your pelvis like an inflating rugby ball internally. This is something you may find it hard not to be able to help with, so perhaps take a look at some of the remedies available or encourage positivity where the darkness glooms.
Making cosy space for an invited sufferer. Chronic illness has a way of making people lose sight of the value in their lives, but it doesn’t mean there is no value, it’s the distraction of adjustment. Symptoms with IC can be continuous, consistent in intensity like a long ‘flare’, come in waves and cause chronic pain. Dealing with something so consistently that you no longer remember what feeling 'normal' is, brings you so many emotions in varying degrees as though there is a cognitive connection. We go through some negative waves through the process and at the other side of acceptance is identity. Sufferers face a lack of independence and freedom, considering the number of occasions that we use the loo, you can essentially be stuck indoors, immobile with one symptom alone or several consecutively. I'd suggest that if you have gone ahead and invited an IC sufferer around, you should stick out some good bathroom reading material just in case. Sometimes a phone dies and you're stuck with the conditioner bottle, which is never a good read.
Understanding cancellations. Unfortunately we can become rather unreliable because, truth be told our bladders control our universe without consent. We lose our dignity if we don't ooze confidence, because we have to constantly tell people about our bladder issues and go into uncomfortable detail when we would rather just pretend we're normal for a day - We didn't choose this life, it chose us; we just work around it.
My advice would be to allow a little flexibility where you would usually lose your patience. I know someone cancelling is frustrating and you may even be used to excuses from people, but in these instances, think for a second before you approach the chat. Another thing, if you're planning trips or events with someone who has IC, considering the loo stops and some home comforts would probably be bliss. Hot water bottles, a pillow to sit on and anything comforting during a flare up usually helps. If it doesn't, then at least you're showing that you care.
It's hard to see someone you care about in pain and not be able to help; but when someone is suffering, just knowing that someone else is invested in their well being is so uplifting. If you can be comfortable with the fact that there isn’t a ‘fix it’ solution and are happy to be supportive over being the hero, this will be a more comfortable condition to face. You are not expected to bring joy to the world of someone with an illness, happiness grows where it is due and the burden is not on one person’s shoulders alone.
If you don't understand something and you really care about this person, then you should find the time to ask or discuss it sensitively. Your impact on their day could mean everything and you may find value in someone that has gained a reasonable, optimistic approach through this life, with a good heart and a good pain threshold too. Your perceptions change on everything when your entire life is adjusted or different. You cannot change the world for everyone, but for someone, you can.