I’m not sure how other people handle their chronic illnesses, but every now and then I do a downward spiral. It all becomes too much, I realize that my support system isn’t the best, and I get tired of “being sick.” During these times I hide away from all things that remind me of my illness and struggle on my own. Eventually something will happen to pull me out of it and I act like a good patient again. I’m not sure if this is a normal thing with chronic illnesses. Maybe I’m just going through the denial and acceptance stages over and over again. I guess I’m at a loss in more ways than one.
A lot of this stems from a lack of a support system. I have talked in the past about being apart of facebook support groups and while these are helpful, they have limitations. These groups are often fairly reminiscent of high school with their “cliques”:
The Popular Crowd:
These are the people who usually post the most. They either have an opinion on everyone’s problem (“Quick! Go to the ER!”), or they have many problems of their own (“Is it normal for my left pinky toe to be able to bend this far back!?!”). While you would think this would get irritating and annoying, it somehow fits in the group and they often get sought after and tagged into the few rare posts that they’ve missed.
The Know-it-Alls Crowd:
This is oddly like the nerd crowd in high school. These are the people who claim to have done extensive research and are an expert in the illness and all things related to it. Sometimes they may even know more than your doctor (“Make sure your doctor checks your free T4 and T3. TSH isn’t even produced in the thyroid!). These people are often summoned for their knowledge and wisdom. Occasionally they will start an argument with anyone who threatens their intelligence.
The Sick Sweethearts Crowd:
These people are amazing at getting support. Somehow they get all the “awws” and “you poor thing”. Now to a certain extent, because it is a support group, this occurs with everyone, but this particular group is strangely skilled at it (did that come off sounding jealous? I’m not jealous…). These are the people whom posts are created for simply to make sure that they are ok (“Has anyone heard from xxxx?? I’m getting worried about her..”).
This is the particular group I’m a part of. I show up, comment on some posts, provide some knowledge (only some, despite the fact that I’m a biology grad..), and sometimes get a few “you poor thing!” comments. Other times I hide, ignore the posts that claim to have found a miracle cure (“I swear! 5.362mg of Vitamin D will make you be able to walk again!”), and write some posts that get completely ignored. The latter one is particularly painful after an ER trip or when I’m feeling like death and is probably part of the reason I’ve reached my “needing to hide” stage. When you don’t belong to one of the above cliques, occasionally your support system in the group can be lacking. This is most definitely not an exhaustive list of the cliques in the groups, but I think it does have the more common ones. So while the facebook support groups are nice in some aspects, they can also be disappointing in others.
Family and friends aren’t always the best support system either. I have friends who would drop everything to come bring me a bowl of soup if I have the cold, but who won’t acknowledge the daily struggles of my illness. It’s hard for them to understand and to deal with I think. Imagine having a friend who felt so miserable so often and for whom you could do nothing to help. When someone has a cold, they’ll eventually get better. Fluids help. Soup helps. With a chronic illness, it won’t get better. it usually, at best, remains stable. Bringing soup won’t cure me, it won’t speed me on my way to recovery. I think friends and family know this and therefore don’t see the point in bringing soup. They eventually don’t see the point in doing anything since it seems like nothing will help. This is one of the worst things about a chronic illness. Bringing soup not only provides fluids, but it’s an outward expression of someone showing you that they care enough about you to bring soup. It’s also showing an acceptance of your condition. When they bring the soup, they are acknowledging that you don’t feel well, that you are perhaps not capable of making soup, and also that it’s alright for you to not be ok, they will help. With chronic illnesses though, this doesn’t really happen. I’ve had people complain to me about their pain and in the same sentence dismiss my pain: “Oh you always have that.” Oddly enough, this didn’t help. It only served to remind me that yes, yes I usually always am in pain and that just really really sucks.