Since developing Brittle Asthma I have found online support groups a huge help and comfort when times are pretty rubbish and dealing with chronic illness has been too much to cope with.
Although I would never wish brittle asthma on anyone it is a comfort in a way to know I am not the only one suffering, there are other people out there too asking the same questions and going through the same difficulties.
There is the ever ending list of questions to be answered that as soon as one is answered there are another 3 or 4 added on the end.
You can talk about the things you don’t want to discuss with medical professionals. As good as their knowledge is into your conditions they don’t know what it is like to live with on daily basis.
You can vent your frustration knowing that others know exactly what you are going on about and can offer advice on how they dealt with it.
Different treatment regimes can be discussed, weird and wonderful drugs which have nothing to do with your condition but might just help alleviate some symptoms can be talked about which some consultant has tried you on as a thinking out the box idea because all the ideas in the box have not worked so far.
Even the little things like which hospital has the better food. The early trivial stuff like that.
Chatting about how friends don’t understand your condition, don’t get why somedays you can do something and others you can’t.
Helping to explain to families who just get so frustrated because they can’t do anything to help.
These support groups are a place to discuss all this and more.
HOWEVER over time I have noticed a horrible flip side to these support groups…..