Grrrr. I know I’m new to this blogging lark, but it’s still mighty irritating to have finished writing my second ever post only for it to have vanished into the ether. And it was a pretty good post too. Now I’ve got to try to remember what I said. Grrrr.
Well I started by saying that I’m not intending for all this “I’m through accepting limits” talk to come across like I’m claiming to be some sort of super-woman. I’m not shouting: “I can do anything I like, so don’t try to stop me!”
Because actually I do have some very specific limits, and I can’t do anything I like.
I have a very rare genetic condition called Common Variable Immune Deficiency (CVID) which is a type of Primary Immune Deficiency. I won’t go into it in detail here as I intend to do so in later posts, but in very simple terms I don’t make antibodies. This makes me very susceptible to all manner of viruses and bacterial infections, and my particular weakness is chest infections which I have frequently (or lately, constantly). This is because I have another condition called bronchiectasis. This is permanent damage to my lungs, caused by 20 years of chest infections and untreated pneumonias. I was diagnosed with bronchiectasis in 1998 when I was 21, and CVID in 1999.
It took many years to come to terms with facing lifelong illness. I had to learn to accept and live with the limits it placed on me, whilst also thinking about how to challenge those limits in a realistic way.
Most of the time I think I deal with it pretty well. I don’t complain much, even though I spend a fair amount of time feeling utterly rotten. I am very proud of some of the things I have achieved in spite of my condition. And I have learned to accept help where I can get it, which in turn reduces the limits I have to face. But today I was reminded that having a rare, often debilitating condition, leads to limits beyond *just* being ill a lot. A big part of what I’ve had to accept is other people’s ignorance, intolerance and plain unkindness. This afternoon’s case in point was a perfect example of the stress, anxiety and frustration that can be caused by another person’s ignorance, and more importantly, a systemic failure to accomodate people who don’t fit neatly into a set of tick-boxes.
I phoned Job Centre Plus to talk through my possible entitlement to benefits. The conversation went like this:
Job Centre Plus: Do you have any illness that may affect your ability to work?
JCP: Do you get specialist medical treatment?
Me: Yes [so far so good!]
JCP: By this we mean dialysis, chemotherapy, radiotherapy or plasmapheresis.
Me: Well it’s none of those, but it is specialist medical treatment. I receive it weekly, and without it I’d probably die.
JCP: [Suspiciously] Hmmmm. What’s it called?
Me: It’s antibody replacement therapy.
JCP: That’s not on my list.
Me: Well no, it probably wouldn’t be as my condition is very rare. But I need to infuse human antibodies once a week to keep me alive.
JCP: What’s the name of your condition?
Me: Primary Immune Deficiency.
JCP: Is that the same as HIV?
Me: No. HIV is a secondary immune deficiency, which means you catch it. My condition is a Primary Immune Deficiency which means it’s a genetic disorder.
JCP: Oh. Well what’s the condition actually called?
Me: Primary. Immune. Deficiency.
JCP: Hold on … [5 minutes of keyboard-tapping sounds ensue] … It’s not on my list.
Me: No, I didn’t think it would be.
JCP: Hold on … [More keyboard tapping] … I’m just going to go and speak to someone.
[5 minutes of listening to “I Will Always Love You” on pan pipes]
JCP: Hello. It’s not on my list.
Me: No, it’s a very rare condition.
JCP: What shall I list it as? Is it a blood disorder?
Me: Not really.
JCP: I’ll put blood disorder.
Me: Oh right.
JCP: Do you have any other condition?
Me: Yes. It’s called bronchiestasis. Would you like me to spell that for you?
JCP: Yes please [keyboard tapping sounds] … it’s not on my list.
Me: Oh really, I thought it might have been? It’s not quite as rare as the first one.
JCP: Can you spell it again please.
Me: [Spelling s-l-o-w-l-y]
JCP: Yes! I’ve found it! Can you tell me when you first had these conditions?
Me: I’ve probably had the Primary Immune Deficiency all my life but it wasn’t diagnosed until 1999. I’ve probably had bronchiectasis since I was a teenager but it wasn’t diagnosed until 1998.
JCP: So when shall I say you first had these conditions?
Me: [banging head on table] You can put 1999 and 1998 if you want to.
JCP: What date?
Me: I have no idea.
JCP: I need to type in a date.
Me: First of September?
JCP: For both of them?
Me: Sure, why not.
JCP: Any other conditions?
Me: Yes, depression.
JCP: [jubilantly] Depression! I know that’s on my list!