We moved a few months ago and we've had to had the pleasure of meeting a bunch of new people. It's always so awkward for me because my illness and pain are so much a part of my life but it's all a little too much info for a first introduction… So I do the modest, polite thing and wait until our 2nd meeting.
Then I started to get to know people better and they must have confused me for someone else or maybe nodded off while I was rambling on and on about the inner workings of my new urinary tract because they actually wanted to get to know me and even become friends. It's very strange. I'm thinking maybe I should write a letter to the mayor about getting the water tested here...
Anyway. These new friends of mine have been wonderful! So loving and accepting of all my weird things- physically and personally. However I have realized I feel the need to recite some warnings and disclaimers at the beginning of these relationships and I thought maybe other people with IC or other chronic pain/ illnesses feel the same. So rather than us constantly reading the rights to these poor, unexpecting friendly people over and over I thought I would put together a list of the 10 things we want others to know about being in any kind of relationship with us… Feel free to share and use for your own people mining.
10. Please don't mention how we look unless it's ravishing then simply say “you look ravishing”.
Definitely do not say “wow you don't look very good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face.
Definitely do not say “wow you don't look very good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face.
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| Look at me. In the hospital, super sick with a kidney infection smiling and throwing the V for Victory... Even though our beloved USC Trojans lost that game... |
Of course sometimes we’re exhausted and miserable making us clearly look sick, no need to point that out either.
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| What a lovely example of me looking sick... And also like I murdered an entire nest of baby birds and enjoyed it. |
As far as clothes… We want to dress cute and normal but our whole entire pelvic area is so sensitive that anything even slightly tight or stiff is unbearable. Leggings becoming trendy was an exciting fashion time for those of us who feel like belted snowmen after a fresh snow storm if we wear jeans. We are pretty much left with sweats, yoga pants, leggings, and dresses.
Don't question the level of formality based on our outfits. Ever. Sometimes we’re in so much pain that even baggy husband sweats are too much pressure and we are forced to wear dresses. No we're not going anywhere. Yes we clean up nice. We know. Thank you. On the flip side sometimes we wear sweats to a party because that's all that we can manage. We know we look like a scrub (I can't think of the last time I used that word and I'm just downright nostalgic about it now.) but just be happy we're out of bed. Thank you.
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| This is me. In pajama pants with tiny martinis on them, oversized sweatshirt and my hubbys boots. At Walgreens. |
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| In a dress. At the river. |
Also, we rarely wear makeup or do our hair. It's hard enough to just get out of bed and maybe even, but not guaranteed, shower. Unless it's an occasion where gifts are exchanged or luxurious food is consumed don't expect much. Yes, I make most important decisions based on food alone.
Which leads me to…
9. Most of us with chronic illnesses, especially IC, are on strict diets. Don't push us to “splurge” or “treat ourselves”.
We're not trying to lose weight (more on that topic next), we mean our irate bladders cannot handle any added acidity. If you truly care then take the time to study the IC diet list and memorize it but I always like to say if you wouldn't want it to drip into an open wound then we probably can't eat or drink it… Tomatoes, citrus, alcohol, spicy foods, etc… Don't take offense if we don't eat your bountifully fresh caprese salad or do a shot of tequila with you at your bachelorette party.(Some of us, including me, are exceptions to this rule but it's a big one for the majority of us!) (I mean the entire diet point not specifically the tequila…) (I feel like I didn't make this clear... After my cystectomy I was allowed to eat whatever I wanted, including but not limited to tequila.)
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| My first legal orange! |
Oh one more thing on that topic… FOR THE LOVE OF GRAVITY PLEASE STOP TELLING US TO DRINK CRANBERRY JUICE. It not only doesn't help, it's a huge trigger for us! Thank you.
8. We are fat, skinny, swollen, starving, sickly, plump… It's not our fault!
We've all struggled with weight in different ways thanks to our disease. Most of the medications prescribed for IC, and other chronic conditions, have the ever frustrating side effect of weight gain and increased hunger but if we find something that helps we'd rather have thighs that look like the gelatinous goop that is carved off of a cold, fatty slab of beef stuffed into patty hose (hello visual…) than any symptom that could be otherwise controlled. We will always choose a medication that helps symptoms long before the hope of a svelte figure. Sometimes our weight gain in simply caused by being stuck in bed with only ice cream and Cheez Its as our companions. Either way. Our increased weight is not at fault for our miseries. I would strongly urge you to consider how much you would like to be tied to the back of a car and forced to run behind it before ever mentioning that exercise or weight loss might help our symptoms. We get real revengey when people say stuff they know nothing about.
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| This is to simply prove how much I love you all. Ehhem... I happen to be in the weight gain side of things right now. That beef fat analogy had to come from somewhere... Oh and the ice cream and Cheez It's as your only companion might be from experience. |
On the flip side, sometimes the disease, symptoms or medications can cause us to lose weight. Of course this is typically a pleasant side effect but sometimes it just makes us look sickly and unfed. You're welcome to compliment us when we've lost a normal amount of weight but I really urge you to think about being forced fed figgy pudding like the poor Grinch before you say we've lost too much weight or we need to eat a cheeseburger. Again, revengey.
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| This was when I was on the sickly side... But Titus hunting for Easter eggs and my Grandparents are adorable! |
7. Being sick is our full time job.
Except we don't get lunch breaks, weekends off, or ya know… Paid. So excuse us if all we talk about is our pain and symptoms or tell tales of doctor appointments and surgeries. We don't mean to offend you with using words like urethra or regular mentions of pee. It's just like you coming home from your desk job and telling everyone about arguing with Linda from accounting over the last stack of post it notes.
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| Basically everyone's face when I talk about being sick. Again. |
6. We are flakeyer than a day old croissant.
We never know how we're going to feel in advance, even 10 minutes in advance. We really want to get out of our sick box so we will make plans and more often than not we will cancel at the last minute. Don't be mad or rude about it, we'd give anything to feel up to going. Don't assume we're not pushing ourselves… just the act of making the plans was pushing ourselves. Sometimes we can manage to muster up enough energy to have you over but sometimes the idea of putting on pants and being out of our bed limiting our usage of the word urethra is too daunting.
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| So sometimes all we do is this.... |
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| But other times we get to get out and LIVE! |
Which brings us to…
5. Guilt is just as much of a symptom of IC, or any chronic illness, as the pain.
No matter how much you all say you understand and just want us to take care of ourselves we feel guilty when we cancel plans. We feel guilty when people have to juggle their busy schedules so they can take care of our kids while we sleep or drive us to dr appointments when we're curled up into a ball of agony. We feel guilty when we're sleeping during the day, we feel guilty when our husbands have to work overtime just to pay rent because we can’t work, we feel guilty when our kids ask if the medicine we take will make our owies better so we can sit on the hard floor to do puzzles, we feel guilty when we push to do something fun but then are too exhausted to do chores. We feel guilty when we see our parents crying over seeing their baby so sick for the millionth time and when our kids have to watch movies in bed with us to spend time with us. I could literally make an entire blog with a never ending list of things we feel guilty for. Just so you know, you're not condemning or judging us for anything we haven't already ripped ourselves apart about.
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| I'm so incredibly thankful for my Mom and how much she does for us, especially when I'm sick but I always feel guilty when I can't do things no matter how much I know that they have fun together. |
Which goes along with...
4. We are not lazy, we are sick.
We would give anything to be able to play with our kids, work at a job, clean our houses, cook for our families, help others that have helped us, be attentive spouses, do the hard work AND the fun stuff! Whether it's from sheer exhaustion, increased pain, or just too groggy and weird from necessary pain meds... We simply can't.
We hate being stuck in bed or the bath or wherever, just miserable. We would much rather be doing something productive. Our houses are messy, our hair is unwashed, our cars are untuned… We can't do life when we're just struggling to live… Take what you can get from us. Be thankful when we do make dinner or do a load of laundry, it probably took as much energy for us as most people use up after a day of living busy life.
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| The excitement when I feel good enough to not only do laundry but organize proves that it's not laziness! |
(Sorry that got a little punchy… This particular misconception really jingles my bells…)
3. We already have doctors so we don't need one with a degree from webmd.
We so appreciate how much you care about us and want to help find a solution. However. We're 1,000 times more desperate for answers. We've done way more research, we've read even more articles about studies and new holistic treatments, and we've probably tried them all.
Please don't claim that your brother neighbor's niece’s cat sitter struggled with our disease and is now symptom free after going on an all natural beef jerky diet. (Now that's a diet I could get behind…)
Don't tell us to try acupuncture or ask “if they can do heart transplants why can't they do bladder transplants?”
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| Nope they can't do transplants. If your IC is end stage and you have no choice but to have your bladder removed you get a bag. Full of pee. That you wear. For the rest. Of. Your. Life. |
We don't need you to fix us. We just need you to love us, listen to us, support us, and hate what we have to go through.
2. WE ARE NOT ADDICTS EVEN IF WE'RE DEPENDENT.
We have serious pain that is regularly compared to that of a cancer patient. Our doctors determine our needs and prescribe narcotics accordingly. That should be enough said but as we all know, it's physically impossible for me to keep anything short so I'll continue...
I've never heard of an IC patient that enjoys the high of pain meds because we're using them for real pain. We hate the side effects of the drugs but find it a necessary evil to be a part of society or just to breathe normally. Most of us will trudge through the scary forest of withdrawals regularly because we refuse to take them unless they're needed.
It's important that you understand that our bodies can become dependent and throw a grand tantrum when not fed but that doesn't mean we are addicted. Our tolerance does shift as the years and pain goes by so yes we will need to increase the dosage and it will vary dramatically.
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| The excitement when I'm off of meds and feeling good... I even get to drive! |
So unless you have some good, concrete evidence that someone is abusing the drugs then assume we have it under control, we respect the drug and acknowledge its power, and we're using it as it’s meant to be used.
Most of all…
1, Unless there is a miraculous intervention or medical discovery, we will never be healed of this disease.
I am a perfect example of this. I had crippling endometriosis and interstitial cystitis so I have my uterus, ovaries, and cervix removed then I had my bladder and urethra removed. You would probably think I am well now? You would be wrong. You can take the disease out of the body but you can't take the body out of the disease.
There will be days when we feel good, maybe even great! Let us enjoy those days without the assumption that it means we're cured. Our pain and symptoms will vary. We may even go into remission but we will always have these diseases lurking around in hidden caves of our body waiting to strike.
Please just love us when we're sick and love us when we're well… Don't put more pressure on us or make us feel like you would like us more if we were better.
If all of this seems doable then welcome! Thank you for your friendship and for walking this journey with us… We will be loyal friends and incredibly grateful for your love but we will also cancel plans, talk too much when we're on meds, and show up looking as unkempt as a hobo. Thank you for reminding us we have something to offer and have worth of our own.
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| Jump in! The water's fine! |
