Having an immunodeficiency disorder and being in a support network with other people who have the same condition is a bit like living on a road full of period houses; lets say Victorian in style.
They are immaculately painted on the outside with reasonably well kept plant pots by the front entrance that only get a bit weary if the person goes on holiday. From the outside, they all look impressive and fine (in both senses), but inside there are problems with old pipes starting to leak, floorboards that are showing signs of rotting, a couple of cracks in the ceiling and ever-so-slight subsidence.
However, the thing that makes it easier for each resident is that there’s a whole road of these houses that have the same/similar problems inside! That means each person can reassure you it’s not just you experiencing boiler issues and frequent power cuts because of outdated electric wiring and plumbing systems.. but most likely several other people have those issues too. And out of those people, it’s almost guaranteed at least one will have relevant details about a local handy men who can provide assistance!
Now think of it like this…
People with PIDs are a bit like this road of period houses. Pretty well maintained generally, unless we are feeling particularly rubbish (on vacation). How we look on the outside is often not a true representation of how we feel on the inside. Despite looking okay, we may perhaps not be fairing so well internally – whether physically or mentally – and be in need of some support from our ‘neighbours’ to sort out our problems, whatever they may be.
The idea that each resident can help point the others in the direction of somebody who helped replace a radiator, or re-did their floors etc, is the same principle as being in any kind of support group. It enables you to learn from other people facing the same struggles so that you have an idea of what you’re up against and how best to go about sorting/managing the problems it creates for you.
In both circumstances;
the help and support is invaluable to each individual, and the common struggle unites them as a single body full of knowledge and experience in dealing with a multitude of challenges.
Let me know what you think about this simile for what it’s like to have a PID and/or be in a support group; share your own if you have one!