National Invisible Chronic Illness Awareness Week.

[rimturse]

I'm not American and I'm not Christian, but I think this is a good initiative:

http://invisibleillnessweek.com/

I'm not going to write a post about living with an invisible illness, instead feel free to ask me anything about invisible illness in general, multiple sclerosis or allergies and I'll do my best to answer.

Since an invisible illness is...well, invisible, maybe you're unsure how much or little you need to take it into consideration? Like you wouldn't ask a friend with a broken leg to go on a hike with you, but could you ask a friend with MS to go on a hike with you? Regarding MS, don't be afraid to ask questions which you worry might be hurtful or upsetting - I can handle it. :)

Comments

[darkspires.livejournal.com]

I think I am very aware of invisible illness with my asthma. There are things I can't do and places I can't go and situations when I have to remove myself with alacrity. If the person drenching themselves in perfume knew it cost me about thirty minutes of my life if she gets too close, would she still tip a bucketfull over herself? Probably, because that is her god given right and I am a minority that doesn't count.

Would I take a friend with M.S hiking? It would depend very much on the distance, whether the ground was flat and the path was paved and there were benches at frequent intervals and how they felt on that day. I would be more inclined to take them on a driving tour of areas of natural beauty and stop off at particularly good spots, again, if the area was a good surface. I might be wrong, and it might vary from person to person a lot, but I thought the sense of balance becomes not as good and the person tires quicker than they would otherwise among other things. My idea of taking a guest to see the sights is to pick only those I am sure they will enjoy and also to involve them with the choice without being crass enough to bring up the reasons something might have been selected over something else.

[frigg.livejournal.com]

*nods*
After I became allergic to perfume, I've really started noticing how there's perfume in almost everything - including dish washing liquid. I mean, WHY would you want to wash your cutlery and dinnerware, things you put in your mouth and put your food on, with perfume?

I think the whole perfume issue is out of control and this is why more and more people are becoming allergic to it. My friend even told me that when she delivers her youngest in kindergarden, many of the little children there are reeking of perfume. Since when did parents start putting perfume on their children???

As for MS and hiking...it does vary a lot of person to person, so unless the friend has a visible walking problem, then there's really no way of knowing whether he/she can hike or not.

[mrsroberts.livejournal.com]

I would think one of the hardest things with "invisible illnesses" is that many of them are unpredictable in their behavior even day to day in the same person. So a person with fibromyalgia, for example, might have the best intentions of doing something on Saturday, but she never really knows how she will feel or is she'll actually be physically capable of doing it. I suppose some people might have a hard time understanding that and think she is making excuses.
Has that also been your experience?

[frigg.livejournal.com]

My daily energy levels are pretty stable, so as long as I don't tire myself out in the days before an appointment, I'll be fine, but I have a friend with fibromyalgia and one with a mental illness who have these problems.

What I have noticed, though, is that although people know I have problems with fatigue and seem educated and aware of it in theory, then it's can apparently be difficult to apply that theory to reality. Like a family member can one day ask about how I'm dealing with the fatigue and tell me to take it easy and not to overdo it, but just 2 days later cannot understand how I can sleep until noon and why my husband doesn't wake me up, but let's me sleep in while he does all the housework by himself.