Wednesday, April 21, 2010


I am so fed up tonight that I could literally scream. And to be honest, it would probably help my blood pressure some if I did! So what am I so upset about? People. Non-understanding, judging people.

Now these people come from all walks of life. They are in the grocery stores; at the parks; at church; and unfortunately for me, even in our families. My doctor calls such people Idiots and after what I've been through in the last 10 years or so, I would have to agree. Some are so, simply because they were never taught to be courteous or caring. Others were taught, but they just choose to think that God came down at some point and crowned them King of all judgment upon the human race.

You may ask, "What are these people judging you for?" Well, actually for everything and everyone in the universe, but more specifically to me, my disabilities caused by my illnesses of Fibromyalgia, Osteoarthritis, Sjrogens, Ankylosing Spondylosis and Depression. These are not all of my diagnosis', but are the most troublesome. I have been disabled by my illnesses for about 10 years now. I have suffered from them for much longer, but not until 10 years ago did it reach the level by which I could no longer function at work, home, church, etc... I went from being an energetic, bright, positive person in every aspect of my life, to one who can barely function in some of life's basest needs such as grooming, shopping, maintaining a household and working a public job.

I get judged from people at the grocery store because I have to park in the handicapped spaces, for which I do have a handicapped tag., and also for using the motorized scooters in the stores because I cannot walk or stand for longer than 10 minutes. I will literally fall in the floor due to the pain and numbness in my back and legs. These judgments are apparently based on their assumption that I am not REALLY sick or disabled because I look like a healthy 41 year old woman on the outside. (although this is gradually changing and I'm looking worse every day from the stresses of such illnesses).

I am also judged by people at church too. Usually because they will want me to participate in some function at church and I will decline. This may partially be my fault though because I usually just give a vague explanation of why I cannot participate rather than telling them outright that my body is broken and I cannot withstand the pressures of taking on such a cause. For example, I refuse to keep the nursery at church because children really make me nervous (I have anxiety issues for which I receive medical treatment) and ALWAYS give me a migraine headache because of the noise. I simply do not wish to be in charge of taking care of helpless children while I feel helpless myself once my symptoms start. Another such example would be singing in the choir. Now in some churches this is not a job that you are tied to, but rather a carefree thing that you do on Sundays. If you miss a lot, it's still OK. But in a lot of the churches that I have been in, it is like an occupation! Choir comes before EVERYTHING else in your life. But seriously, you are expected to be at every practice, definitely every performance and sometimes even traveling is required. As much as I love to sing in the church choir, I cannot guarantee that I'll even be able to make it to church every Sunday, let alone give a performance. Many days I spend in bed. All day. And it's not just on Sundays. So I don't think that I can comfortably make a COMMITMENT to be in the church choir under these requirements. I am not against the requirements, but I'm simply not up to the challenge and I don't think it's right to agree to the terms if you know you cannot keep them.

The last category of judgmental people I have to deal with is by far the most painful. They are my friends and family. These are the people who are supposed to love you unconditionally, but they don't. They love you when you fit into their plans, but not when you are unable to go out to lunch with them or go shopping with them or attend a 50th birthday party because you are laid up in bed and have been there for a week. Here again, it is all in how you are perceived by these people. They view you as the healthy, vital, carefree person you were in an earlier life. They don't see the days that you need your husband to wash and comb your hair because the fatigue is so great you cannot do it yourself. They don't see when you need help getting dressed. They don't understand why you can't bring a covered dish to the Christmas Dinner, or why you can't even come to the Christmas dinner, which is a 4 hour round trip drive, because you can't stand up long enough to cook. You can't remember how to make the dish, even with the recipe right in front of you, because you cannot comprehend the words on the recipe! Fibro Fog is an ugly thing!
These people, friends and family, get mad when you are simply too exhausted to drive out of town to meet them at a restaurant to eat. I've personally had to cancel such excursions so many times that now I will not even agree to go. They don't see that I'd LOVE to go with them, but I simply cannot. What's wrong with them coming to YOU once in a while? Why can't they drive to your house and order a pizza while you watch your favorite movies together? Why can't they EVER be the ones to sacrifice a little? Just because I'm the one who moved away doesn't mean that I should always be the one to make the sacrifice. I mean, am I being punished for moving away with my husband to start a better life for ourselves? I mean, come's the same distance for me to drive as it is for them! I love my family dearly, but they have shunned me for these very things. How my heart breaks each time I see them because I'm judged for something else I did or didn't do as they wanted it to be. I love my family, I really do, but because of some of their actions, I have been advised, by many people, but especially by my physicians, to simply stay away from them and drop all contact for a while. It just hurts me more and more , both emotionally and physically, each time something like this happens. Stress is a killer.

So what am I going to do about all this judgment? Try my best to just ignore the "Idiots" I come in contact with, Love my family and "so-called" friends, but limit my contact with them. And in the meantime try to find some support groups for just these types of issues. It's time I started taking care of myself, not everyone else. I can only do what I can physically and emotionally do and everything else has to go by the way side. If you're truly my friend, you'll stick by me. If you're really a family member who loves me, you'll wait on me, come to me, or meet me half-way. You'll be understanding or at least have empathy. Maybe you can't understand, but sometimes you just HAVE to believe a person at their word!

Do any of my Fibro and Arthritis friends out there have similar problems? If so, please let me know. My prayers are with you all.


Trisha Pearson said...

I am so sorry you are dealing with this. It really is the last thing you need and it makes me so mad that people refuse to understand. The one thing I wish people could understand about chronic illnesses is how much energy it takes just to do the little things in life that "normal" people take for granted. Sometimes we don't have enough energy to take care of ourselves and our children yet we are expected to keep doing things for other people. It's maddening.

Most of the judgment I've had to deal (in the form of things said directly to me, who knows what is said behind my back)came from a particular friend who criticized me for "becoming so reclusive." If I said I was too tired to do something, she would say things like, "well, I'm tired too" Hello! Fibro tired is a lot different than regular tired. With things like that, I just shut down when I probably should try to explain it better.

I finally just read the origin of the spoon theory and I wonder if explaining the fatigue to people in that way might finally get through.

But some people just aren't going to get it. Personally, I limit contact with people like that but it's got to be hard when they are family.

We do need to put ourselves first because we have children to raise and we simply can't keep up with the demands of that if we are exhausting ourselves trying to please other people. That's what I remind myself when I start feeling guilty about not doing something. I HAVE to keep myself rested enough to feed my children and get them where they need to go.

So, take care of yourself and don't feel guilty about it and don't take any crap for it either!!!!!

Teresa said...

Thanks Trisha. I was beginning to think I was the only one who felt like this!

Bonnie said...

Teresa, I saw the topic of your blog and decided to be a follower right then. I too suffer from Fibro. I understand completely how you feel. I hate being judged by people who don't understand that we may appear fine but on the inside we are crying out in pain every single moment of the day. I'm lucky that my family is pretty understanding even though they don't actually know what I feel like. I get alot of help from my wonderful husband and daughters. It is people that I don't know or people I work with that I dont think really get it. I ask for help very very seldom. When I do I feel guilty because I know what they are thinking. May be not all of them but most. So I go through each day trying not to complain or ask for help. Then I do things that only make me feel worse, but I'm the only one that knows how bad I do feel. I am 50 and feel like a ready to die 90 year old. I will pray for you and your followers also and I'll be back.Bonnie