Being Invisible

Emily with Chronic Pain Bear

I'm going to start this post out that I'm not writing this to try and get sympathy. I just wanted to share some thoughts about how having an invisible illness can make you feel invisible sometimes.

I've talked about this a lot - how I suffer from daily chronic headaches that often turn into migraines. I'm sure a lot of people think it's probably no big deal. There are a lot of people who don't know what a migraine is, that it's much, much more than a bad headache. Because of this, it's not in the same ranking as other diseases out there.

Case in point, my husband got diagnosed with MS in January. It's a horrible debilitating disease, but at this point, he's ok. He's noticing some small things, but he hasn't had an episode in over a year. He did what he had to do - he changed his eating habits and started exercising. He's lost 50 to 60 pounds and is in the best shape he's been in since I've know him.

Me on the other hand, my pain levels have gotten worse. So much so, that I had to go to the ER a few weeks ago. I muddle through but there isn't anything that I can do because no treatment I've tried works. Can you guess who's health issue worries our loves more? Can you guess who gets more questions about the state of health? Hint, it's not me.

I don't begrudge Todd all the inquiries about his health. I worry about him too, but I live with him so I see that he's in much better shape that I am. For me, I'm just invisible.

I'm on several Facebook groups with other people with chronic pain. It seems like every week, someone is talking about how their spouse has left because they couldn't deal with the constant pain of their significant other. I'm very lucky to be married to Todd - we started dating when my pain first started. We've been together over a decade and our marriage is still strong.

Emily is also a blessing to me. Even though I probably should not have put my body through a pregnancy, I'm thankful every day for my little girl, even though I've been told that I shouldn't talk about my illness with her at all. She knows about my chronic though and I think it makes her a more compassionate person.

I also try to be a more compassionate person. I have several friends who suffer from chronic illness, and I try to keep up with how they are doing. I know how isolating it is to have a disease with no cure.

In the past, I've lost several friends in part because of my chronic pain. Even two so-called best friends. I know that my pain makes me flaky sometimes, but I'd love to be invited to things. If I feel well enough, I love getting out of the house and doing fun things.

My situation is complicated by the fact that I have to bring Emily with me just about everywhere I go because Todd works 2nd shift. She's old enough now that I can at least go to choir practice and Emily will sit quietly and color. But I tend not to go to the variety of geek stuff around town because Emily may be bored. I would love to be able to game again but I don't see that happening. I'd love to play board games, but most of our games really don't work well with just two people.

It really is a first world problem but it is one that it compounded by the fact that I'm invisible. If I keep having to cancel, I stop getting invited. I fade into the woodwork and am not thought of - at least that's how it feels.

When someone gets sick with something that is even vaguely treatable, it seems like people will flock to them. Keep up with their triumphs and their defeats. When someone has chronic pain, people are there at the beginning but then they fade away. I know it can be hard to deal with seeing a friend whose in pain, but think about how that friend must feel.

Now, I didn't really write this for myself. Yes, I get lonely sometimes. The vast majority of my friends live in the internet and I don't get out of the house a lot. But a lot of that is my own choice or a product of the situation I'm in right now with only one car and a husband who works 2nd shift.

But if you have a friend who has a chronic disease - something that they will be dealing with the rest of their life, try and remember to include them. Text or send an email to see how they are doing every once in a while. Try to keep them visible instead of letting them fade away.

The Stigma and Misunderstanding of Migraines

The face of a migraine sufferer (or me)

Before I started suffering from chronic pain, I thought that a migraine was just a bad headache. I bet a lot of people think that. Migraines are so much more than a bad headache – it’s a whole neurological disease. People with migraines know what a debilitating disease this can be and we are sick of being trivialized.

Kmart is running an ad currently that has a husband and wife taking about surprises with the new Kmart pharmacy. Most of the “surprises” have nothing to do with health issues – for example the husband says to begin how his mother in law was just supposed to visit and then stayed for 30 years. But at one point the wife says in retort that she doesn't have migraines implying that she does have migraines.

Now if the wife was suffering from some other disease like MS, it would be totally taboo for her to say that she doesn't have that disease in jest. For some reason, Kmart and their parent company Sears, doesn't think that migraines are bad enough of a disease that it can be used in this fashion.

Migraines should be considered seriously but obviously they aren't. This makes me angry because I know how hard it can be to suffer from migraines. I end up in tears sometimes because the pain and other symptoms can get so bad. I've also lost several friendships because they think I’m trying to get attention or not as sick as I say I am. I pretty much don’t have any close friends outside of the internet because I don’t get out of the house much.

You can read more about this and even see the ad at migraine.com and you can also go to change.org to sign the petition.