A Warning….

A warning to those who participate in support groups: They’re both wonderful and terrifying!

In these groups, you’ll meet people who share your disease. You’ll see how strong they are, how resilient they are, and how weak they are. You’ll see people live with your shared disease…. and die from it. You’ll see the obstacles they overcome, but also how terrifying those obstacles are.

The support groups will show you just how bad your disease can get. They’ll surround you even more with the reality of what it’s like to live with your disease. You’ll have your own medical appointments, tests, hospital stays, visits to the ER… but then you also get to see everyone else’s as well. Not only are you living with your illness, but also the illness of those you support.

These groups offer so many benefits, but they come at a price. They are an amazing thing to be apart of. It’s truly wonderful to be connected to people who know what you’re going through. You can get so many answers to questions and also validation for much of what you’re feeling. But they also keep your illness at the forefront of your mind. You fear what new symptoms you might get. And when you do get a new symptom? Suddenly you’re terrified about what that new symptom might mean. You look up diseases that others’ have that you haven’t even heard of.

It’s like Dr. Google telling you that that bug bite you have is actually cancer. Only worse. Because so many other people with your illness showed the same complication and now has the same new diagnosis.

Never mind the fact that the support groups seem to bring out the newly diagnosed and those with the worst cases.

Thank God for the old-timers of the group who are there to remind you that you’re not likely to die any time soon.

So while I love the support I have received from the groups, sometimes I need to remind myself that everyone is different. Having the same diagnosis does not mean that my illness will follow the same path.


It’s Not About You…

Dealing with a chronic illness is never easy. There are ups and downs and more sorrow than you can imagine or that can possibly be explained. So here’s a blanket statement that might make it a tad easier for friends and family to deal with: It’s not about you.

I know this may seem rude, but it’s really not meant to be. It’s just something that should be kept in mind.

It’s not about you… when I’m anxious. Chances are I’m scared or nervous about an upcoming appointment. Each appointment is like a huge question mark about whether the doctor will help me, blow me off, or call me a liar. They are nerve-wracking and terrifying and I get anxious right before the appointment and unfortunately respond with grumpiness.

It’s not about you… when I’m quiet. Pain and exhaustion take up a lot of energy and attention. If I’m being quiet, it’s not because I’m mad or angry at you. Most of the time I’m just hurting. A lot.

It’s not about you… when I don’t want to share. I live with my illness 100% of the time, 24 hours a day, 7 days a week… etc. Sometimes I just want to escape it. Sometimes I want to pretend that the doctor appointments don’t happen. That the medical tests are not a reality. My not opening up and telling you all about it does not mean that I do not trust you or that I’d rather keep things from you. It might just mean that I want to keep it from myself for a little.

It’s not about you… when I cancel plans. Ok, this one may seem obvious, but I feel it needs re-stating. If I cancel plans, it’s not because I don’t want to see you or don’t want to hang out, but is instead probably due to the fact that I’m not feeling well. Some days I look and act perfectly normal so it’s hard to remember that I am sick.

It’s not about you… when I’m angry. Unless I tell you straight out that I’m angry at you, don’t assume I am. I watch every day as people do things that I should also be able to do. I feel weak, insecure, tired, pained, and half of the time I feel like I’m a failure. It makes me so angry to know that I could do so much more if I didn’t have to suffer with this. So I get angry when I see or think about things that others do so easily.

I have a chronic illness and I do the best I can in order to get by day to day. Most of the time all I ask from my family and friends is a little understanding.

Lack of Support

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..”). 

Everyone else:

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.