The very worst part of being chronically ill, is the guilt.

No really, I’m not kidding. Worse than; in no particular order,

the pain,

the tiredness,

the diarrhoea,

the bleeding,

the constant low-grade headache,

the skin lesions,

or even having to deal with tin-god junior doctors.

Seriously, worse than any of that is living with the guilt. But what do I mean by “the guilt”? Well that’s going to take a bit of explaining.

The average person can do pretty much what they want to do. Want to see a movie with a friend? No problem, “Which movie, and what time?”

Tell their partner not to worry about the housework, that it’ll all be done when they get home; yup, got that covered.

Or how about wanting to go to bed with a lover, going all out with the flirtation, the foreplay, the making them feel like they’re standing at the centre of a sexual whirlwind; then having to stop because you’ve run completely out of energy, or because your body has decided that this is exactly the right moment to need to throw up?

My own life is a huge list of cancelled plans, lost connections, and missed opportunities. I can’t begin to count how many times I’ve gotten ready to go somewhere, only to have to cancel at literally the last-minute. Or how many times I’ve missed events that I was really excited about attending; many burlesque events, artistic events, movies. Hell not that long ago I had to miss one of my favourite singers, Voltaire, because my body decided that it really needed 4 straight days of bleeding from my bowel.

In essence, I am an involuntary flake. Totally unreliable where any social life outside of my own home is concerned. To be able to do something as minor as go do the weekly grocery shop I rely on medicating my body to a point where I will “probably” get a few hours of not needing to be within ten feet of a toilet. Note the “probably”, the quotation marks are there because about 1 time in 10 it doesn’t work, with sometimes rather cataclysmic results for my underwear.

Now, you’re probably thinking that this should all lead to my feeling sorry for myself. But it doesn’t, or at least it only does very rarely. I’m used to not being able to plan with any certainty. The best I can ever promise is “maybe”, or very occasionally, “probably”; I’m used to being like that. I’m used to never being able to even think “definitely”. Definitely simply doesn’t exist in my life, and I’m used to it, I’ve had to grow used to it.

But what I’ve never grown used to is the guilt that goes with constantly letting other people down. For example, I quite simply can not remember the last time I went out for a night with my Partner-in-Crime. No memory at all, it’s been that long. And I feel terrible about it. I know she loves a good night out. I know she would love to have one with me, but…

See, there’s always that but. Even if we manage to make it out the door, odds are I’ll need to come home very early when my bowel starts to voice its disinterest in staying away from its porcelain best friend.

The same goes with friends. Over and over I arrange things with friends, only to have to cancel at the 11th hour because I simply can’t leave the house any longer.

So, boom, guilt for letting them down. For cancelling plans and leaving them in the lurch.

Then of course there’s the other sides to the guilt. The the side triggered by the worry you cause people you love. Or the aspect of it caused by not being able to pull your own weight. Or the guilt that strikes when you realise that you’re just a bad girlfriend, a bad friend, a bad lover, daughter…the list goes on and on.

And all this means that you say “I’m sorry” waaaaaay too much. So you find yourself feeling guilty for being sorry.

Yeah, being ill is rotten, but feeling unending waves of guilt is worse. Now if you’ll excuse me, the toilet is calling my haemorrhoids, by name.

A follow up to being a friend to the owner of Angry Bowel Pixies.

Back in March of this year I wrote an article about being a friend to someone with a chronic illness. In it I covered ten things which I feel make for a wonderful friend to have if you suffer with a chronic ailment. But the past week has brought to mind something which I think should probably be folded in.

During the past week in addition to all my usual physical problems, the universe saw fit to give me the gift of a kidney infection. The key words in that last sentence were “in addition to.”

Everyone has their own normality. What’s normal for you might well be completely unusual to me. My normality is to be a polyamorous, BDSM living, purple-haired, computer gaming ,futagirl, try saying that five times fast when you’re drunk. But my normality is also to always feel like I have the worst food poisoning you’ve ever experienced, combined with a migraine that starts somewhere in my throat, and ends at my anus, and to add extra insult to injury constant muscle and joint pain. This is what I feel, to varying degrees of severity, essentially every moment of every single day of my life. That is my normality, and I’m very, very good at hiding it from people.

But as sick as I feel all the time, I can still get sick. I can, and do still catch colds, catch the flu, get hay fever in the Summer, develop migraines (in my head), and of course I regularly get some truly vicious kidney infections.

The thing is, most people who are chronically ill will create their own type of normality. They will create a life they can live with. It may not be particularly fulfilling. It may not be easy. But they will create one, and that life is what will be normal for them.

My normality is to spend an awful lot of time in bed from sheer exhaustion after doing minor things, like hoovering. It includes things like always flushing the toilet before I use it, just in case there’s bleach in the bowl (burning badness). Spending most of most days sitting quietly because it hurts too much to do anything else. And making sure I can always reach the toilet in time based on how I feel at a given moment, and believe me after 30 years of this I can often time, almost to the minute, when an attack will hit me. Normality also includes one usually random day most, though not every, week where for a few hours I can pretend to be normal. When I get to go to town with one of my friends. Or go out for a meal. Or…just be a regular woman in her 30’s.

But that normal life doesn’t include kidney infections, and all the extra pain, weakness, and that rotten sickly feel they bring.

Normal doesn’t include a pain in my head so bad that I feel like I would gouge my eyes out with my own fingernails for just a few moments relief.

All of this is to explain something which you should never, EVER say to or about someone who is chronically ill.

Person A “Where’s Mary?”

Person B “In bed with the flu. She’s very sick the poor thing.”

Person A “God she’s always sick.” or “There’s always something wrong with her.” or “She’s always got something to moan about.” etc.

If you’re lucky enough to be physically robust you probably take that for granted. You probably take your normality for granted. And when you get the flu, or a cold, or a migraine, or…well anything, you’re probably insufferable. It’s the bubonic plague, and no-one’s ever been that sick ever in the history of history. And that’s fine, you’re entitled to feel that way when you’re well, and you’re entitled to feel sorry for yourself when you’re not.

But when you say something like “God, she’s always sick.”, to or about someone who is chronically ill, you’ve probably just punched them in the heart with something they’re probably fighting everyday to hide from the world. I know I don’t want every person on the street to see that I’m in agony, I want them to see a strong, healthy, good-looking woman. I don’t want the world at large to see a woman who sometimes has to crawl up the stairs because she hasn’t the strength to walk up it.

When you say it to or about them when they’ve gotten sick, in exactly the same way you do, but while they are still coping with everything else that they always have to cope with…that’s just about the shittiest thing you could say. And if they’ve heard you saying it, you probably turned a really bad day into a day that might make them wish they’d never been born.

I’m lucky, all of my friends are amazingly accepting, supportive, and understanding of what normality means for me. But I have had these things said to me. I’ve had the flu, and had someone say “Well you’ll be fine, you’re always sick.”

Why yes I am always sick. Thank you so much for pointing that out, and reminding me that even when I get rid of this flu, and I’ve gotten back to my version of normal, I’m still going to feel like hammered shit. Every. Single. Day.

Oh, and thank you for being so understanding of the fact that while I may be sick all the time, I don’t have the flu all the time, so I don’t have any way to cope with it, you know the same way you don’t…I hope you catch it off of me you insufferable prick!

What I’m saying is don’t do this to people you know who are chronically ill. Try to understand that they have their normal days, which may be loaded down with pain, and discomfort, with disgusting discharges, and worrying about whether they’re going to humiliate themselves on the bus. But that even that normality, just like your normality, can be made so much worse by catching something as simple as a stupid bloody cold, or a bad-tempered kidney infection. Because I don’t care how sick you feel to start with, nothing is made more bearable by feeling like you’re urinating razorwire, that’s been coated liberally with chilli powder.

Being a friend to the owner of Angry Bowel Pixies.

I’ve written before on coping with a chronic bowel illness, and helping those around you to understand what you’re going through. Today I want to talk about being a good friend, or partner to someone in that situation. I dare say a lot of people will read that last sentence, and roll their eyes. After all they’ve been friends with someone chronically ill for years. They know what they’re doing. They know how to be a good friend to that person. And they probably do.

So while I hope that those people will still read this article, and possibly gain something from it, this piece is far more aimed at those who have just become the friend or partner of someone with a severe illness. I hope to give those people some small insight in to how to approach this subject which I have so rarely seen dealt with. So below are my tips for having a good friendship or even partnership with a sickly individual.

1. If you ask how they feel, and they are honest about it, try to make sure you don’t make them feel bad afterwards for being honest. It’s hard for anyone to allow themselves to be vulnerable. For someone who is sick all the time it can be far harder. So when your friend is totally honest about how bad they might be feeling at that time take it for what it is. Proof that they trust you enough to be vulnerable with you. Try not to make them feel worse by even accidentally throwing it back in their faces later.

2. If they have any odd dietary requirements try to have an idea of what they can’t eat before you book a table anywhere. This one’s probably pretty self-explanatory, this way at least you can ask the restaurant if they cater for someone with that food allergy. If they don’t just contact your friend, and try to work out an alternative.

3. Try to plan activities that take their physical condition into account. Another self-explanatory one, I hope at least. A days shopping is welcomed I think by most (though not all) women, but walking from shop to shop for hours may simply not be physically possible for your friend. Try to plan out coffee stops, or something similar to let them catch their breath.

4. When they cancel some long laid plans at the last moment be understanding. They didn’t want to cancel. They wanted to spend time with you. It’s possible, maybe even probable that as soon as they hung up the phone they cried from frustration. Being ill in this way means that sometimes you just can’t make it. The plans might have only been for coffee a couple of minutes away. But those couple of minutes to you, could represent running a marathon with no training at all, to your friend.

5. Some illnesses have unpleasant side effects, help your friend with them. I’ll use my stomach as an example here. I have accidents. Not often, but they do happen. And sometimes I don’t notice at all. If you’re truly a friend, and you notice you’ll mention it to your friend. Quietly, without drama, without causing any fuss. Well lots of illnesses have similar side effects. Be a hero, and help your friend to not be humiliated.

6. One for the lovers now. Sometimes (I’m aware that this is dangerous ground I’m treading here.) with a chronically ill person “I don’t want to!” can actually mean “I physically can’t.”. So discuss things, in plain language so as to avoid misunderstandings.

Let’s use an example here, and let’s be plain, and simple about it, let’s talk about anal. Anal rocks. It’s often a wonderful addition to a healthy sex life. But no matter how much you might love it, if someone has a chronic bowel problem they very probably simply can’t do it. No matter how much they might want to. So instead of hearing a simple “No!”, politely, lovingly ask your partner “Why?”. Don’t find yourself stewing, festering, resenting, and potentially hurting a perfectly good relationship.

7. If your friend is housebound a lot of the time encourage them to go out, and do things. But, and this is important, don’t be really pushy about it. You want them to know that if they want to, and can get out on that particular day, that you would like their company. On the other hand if you’re too pushy it’ll start to feel like you’re obliging them to go out, even if they aren’t well enough to. It’s a fine line I know, but if you’re aware the line exists it can be easier to find it.

8. Don’t talk about their health all the time. Okay, now this one’s a little odd to explain, so bear with me. People who are ill can often hate talking about how they feel, their treatments, doctors, etc. But because often there isn’t much else going on in their lives it’s all they have to talk about. Add that to well-meaning friends who just want to lend a willing sounding board, and you can find yourself with an unending conversation that drives everyone nuts by the end. Yes, do talk with your friend, or partner about their health. But make sure you also talk about other things as well, even if only to remind them that someday they may be well enough to truly rejoin the world, and that it’s a day worth fighting for.

9. If you can go with them, and if they want you to, go to the hospital. No matter how many times they’ve gone before, hospitals are intimidating places, they’re also boring as hell, and someone to chat with in the waiting room is only a good thing. But more than that, hospitals are where people with chronic illnesses often only ever hear bad news, and sometimes they’ll need a shoulder to cry on immediately afterwards. Try to give them that.

Finally, for now, the most important thing you can do for your friend, or love if they live in this kind of situation is…

10. Tell them that you love them. Really obvious, huh? Well actually yes, and no. You should tell people you love that they are loved anyway. It’s important to feel loved. But for someone who is trapped by their body, by their health, who doesn’t necessarily see many, or even any people most days, it matters even more. When you’re trapped at home for day after day, it’s easy to feel cut off from the world. It’s also easy to feel forgotten, unloved, unwanted. Three little words can take the worst day they’ve ever had, and if not make it better, at the very least make it bearable for a little while longer.

Angry bowel pyxies and the people in your life.

In February, I wrote about coping with some of the symptoms which are shared by Crohn’s Disease, Irritable Bowel syndrome and Colitis.  I however, missed one very important factor of coping with a long-term, chronic illness.  Helping the people in your life to cope with your illness.

A little story perhaps will illustrate.  I have a wonderful adopted little sister, (I in fact, have four but I’m speaking about the youngest, most kittenish of them here.) and today she was upset by my illness or more precisely, by the idea of my being in pain.  In her work, she saw images, of the damage that can be cause to the human body, by what is wrong with me.  The end result, was a lovely phone call, so that she could tell me she loves me.

My partner, yes that’s right, the grandmother of the Force of Nature, she also lives with the day-to-day  implications of my illness.  So too, to a greater or lesser extent do my mother, my other adopted little sisters, the Force of Nature, most of my friends, etc.  And they all react in different ways, each in keeping with their own strengths and weaknesses.

But the Kittens phone call today, made me realise that just because they know, just because they deal with it in their own way, does not erase my responsibility to help them cope with my health.  After all I’m the only one who can explain to them what I’m going through.  The only one who can tell them in a comprehensible way how they can help.  I have to be the one to make sure, that when there is no need to worry, they know.  Though stopping them worrying is beyond my powers.

This is something I understand well.  My partner is diabetic, so I worry constantly about her blood sugars, about whether she’s eaten a breakfast and of course whether her foot will be dropping off anytime soon.  This despite my knowing, that there’s really not a lot to worry about.

Regardless, when you suffer from a long-term illness, you need to educate the people who love you.

They need to understand:-

Why sometimes don’t show up for things.

Why you seem to eat exclusively in certain places.

Why you act really odd sometimes, when you’re in public.  Well odder than usual in my case.

They need to know that sometimes you are, actually alright.  It may last for only a few hours, but that in those few hours everything is great.

But most of all they need to know that their concern makes you feel loved, and so, feel better.

I’m not going to write a list of helpful hints on this.  There aren’t really any.  You will have to take each relationship as it comes and act accordingly.  I will say this however, never forget that those who love you need reassurance from you, every bit as much as you do from them.