Next week it will be one year since I was diagnosed with Fibromyalgia. I’ve learned a lot about life and about myself in that time and in the time leading up to my diagnoses.
I’ll try not to repeat things from previous posts, but here are some things I’ve learned and observed which I haven’t already mentioned.
I really thought once the doctors found the problem, things would get better. I believed once I could name what was wrong with me, other people would stop judging me, and that I could maybe start to get better. Unfortunately, that’s not the way it is. People are going to judge things they know not of, and there are rarely cures for our hardships.
Most people are going to see life through the lenses of what they have experienced. It is hard for some people to see my life and not feel that I should be able to live life like they do. I live day to day, screaming for someone to understand me. For people not to judge me. I thought that as soon as I could tell people why I practically don’t work, they would stop judging (Did I not know people AT ALL?). But unfortunately, some people are always quick to try to find fault with me. They want to make it my fault for being sick. They ask about my diet, my level of exercise, my sleep, and anything else they think should turn my situation around.
Well, sorry. I’ve tried going vegetarian, I’ve tried eating nothing with MSG, I’ve tried cutting out all the typical problem foods, I’ve tried going gluten free. I’ve tried supplements and other homeopathic remedies. Nothing has worked, so please do not ask about my diet. Right now I’m just trying to stay at a healthy weight, which means I eat whatever I can swallow, whenever I can.
I don’t even want to talk about exercising. Try exercising when your head hurts so badly you think about which knife you own is the biggest and sharpest, and how it really isn’t a good idea to amputate your head. And that’s just one part of the pain. I’m not going to go into trying to exercise when everything else hurts also. I’ve tried regular exercise, and guess what. It did nothing. Now my motto is, I’m active when I can be.
And don’t ask an insomniac about sleep. None of us enjoy going on three or four (or less) hours of sleep. We’ve read the literature. We know you need regular bedtime habits. Some of us even follow all the guidelines, but there is still no helping spending hours trying to fall asleep and/or waking in the middle of the night just so you can listen to your significant other enjoy their sleep.
**One disclaimer is that there are some people who can ask all of the above questions with such sensitivity that I have never felt anything but support and a desire to see me be well. Those people I adore. My friend Cathy is always exemplary at asking caring, meaningful questions. Just ask her if you want any advise 😉 However there are those who ask with such an attitude that it makes me really angry and defensive. Those are the people I’m talking about. Oh, and I’m not talking about questions such as, how are you sleeping?, or have you been eating ok? It’s the questions like, do you go to bed at the same time and wake up at the same time every day?, or have you been eating healthy? Those questions drive me crazy. What it comes down to is intention. I can usually tell the difference between someone who asks because they care deeply, and those who just don’t. So unless you really truly care, don’t ask me. I don’t want your questions just so you can feel important, smart, or to satisfy some obligatory Christian caring thing.
I’ve tried concealing the “sick” part of me to save myself from all the judgmental insensitive people out there. The problem is that I feel God has asked me to try to shine a light for people in similar situations and to be authentic. I’m really tired of hiding myself just to make other people feel better, or so they will like me. I want to be transparent, even if it means being hurt in the process. I want to live in the light, scars and all. I want to stop being afraid of what people think, and start being me.
One thing I regularly get told is, “But you don’t look sick”. Oh sorry, you’re right. I’m FAKING it. What do they want me to say? Yes, I just love spending almost all my time at home, lonely. I love canceling things, missing out on fun things and spending time with friends. I just love pretending to be sick. Note all the sarcasm. Not everyone has the advantage of looking like something is wrong with them (I’m not saying I WANT to look sick, or that it is better to look sick, I’m just talking about the disadvantage is can be). Some of us have to be sick all the time and have other people assume we’re faking it because they cannot see it. They assume because our illness cannot be seen, that our illness must be in our heads or that we just want attention. Honey, I got more attention before all this, so definitely NOT an attention thing. And if it is in my head, which it’s not, then that doesn’t make the pain any less real.
Another fun one I hear regularly is, “Enjoy your health while you’re young”. HA HA HA HA! Dumb asses. I vacillate between wanting to hit them and laughing my head off. Because really. That’s just a hilariously ironic thing to say to me, who they know nothing about other than said young factor. I hope they say that someday to someone who has cancer (not really, but you get the idea).
I’ve learned God says no. No, and not yet (which I will be using interchangeably for simplicity sake) . This is something I’ve known since middle school because that’s what my church taught me to say if someone I prayed for didn’t get healed. Strange then that when I became sick people acted like it was my fault that I wasn’t healed. Hmm. Can anyone guess why I’m allergic to most people asking if they can pray for me? Anyway, it’s one thing to accept that God says no to other people, another thing entirely to realize God has said no to you. Not just that you can’t get married when you’re 16 because your parents won’t sign the proper forms, or no to that new car you want. No to living a normal life. No to a life of being well. No to feeling assurance that you’ll be able to afford your next doctor appointment or your medication.
I almost called this blog post, “What Happens When God Says No”, and then found out I had a lot more to say than that. But, there are multiple things that happened to me when I realized God was saying no to me and after he said no. I’ve had to go through these feelings multiple times over the last several years. I don’t give up praying and I retain hope that one day I will not live in such pain, but unfortunately that means I’ve had to accept “no” year after year.
1. I’ve felt a lot of sadness. Not exactly the type of sadness that comes with depression, just sadness. Tears running down your face, frustrated sadness.
2. I have felt such a deep loss of who I am, I have felt at times like I can’t find myself. It’s better now, but sometimes I have felt that I didn’t know who I was without the ability to carry out my desires and ambitions. I actually think that God has stripped me down to my core self by taking away the ability to do all the things I wanted. By taking those away, I’ve had to hunt for who I am without it all. I’m still finding myself, but it’s a much stronger self than before.
3. I have felt so much anger at God for letting this be my life. I have fortunately not spent great periods of time being angry at Him, but I have still had times of feeling intensely angry. I just didn’t/don’t understand why. If I just saw a good reason for it or even if I just saw an end in sight, it wouldn’t feel so much like he doesn’t love me as much as he loves everyone else. Why does He bless other people so much more than me? I think it’s ok to have times of anger and questioning with God. Through my questioning and anger, I believe I have just a little better idea who God is. I used to FEEL that God loved people. Now, I KNOW He loves people. I had a lot of things I felt about God, but now through my anger and questioning there are more things I know, even if I don’t always feel them. I’ll take knowing over feeling every time. I think I’m stronger in my faith now than before.
4. I have worked so hard to not be jealous of the lives other people are living. Lives with careers. Lives with children. Lives with… living. It’s a constant battle to remind myself that everyone has their own problems and burdens, and that they’re just different than mine. The problem is that I can tell myself that all I want, but it still doesn’t change what I see. Lives of ease and blessing (see 3).
5. I have learned to feel acceptance and peace. Still no happiness to be found per se, but acceptance that God is in control. Still not always happy with his decisions, but I accept that he has told me no. I feel a calm about my life. I don’t feel that my boat is in danger of capsizing.
6. God saying no has allowed me to move on. See life for what it is, and try to find things I can do that bring meaning and enjoyment to my life. Ok, so I can’t have a career or kids right now. I can enjoy making things with my hands. Even though knitting and crocheting often hurts, it gives me a deep satisfaction to see what I have made out of some balls of yarn. I can enjoy this time with my husband, and give him my full attention. I can’t spend my time outside, but I can sit under our skylights and read. I can’t spend as much time with people as I’d like, but I can read people’s stories and let them touch me and change me. I can cry for people and laugh with people, even if we are not face to face. I can learn as much as I want when I am able. I can learn how different people think and feel. I can learn other languages and about other cultures. Not everyone has the time to do all that, so in that way, I am blessed.
8. I have a much stronger desire to love people now. Not that I didn’t before, but now it is something I almost can’t even control. I even want to love on the people who have hurt me deeply, if they would let me. If someone is hurting, I hurt too. I cry ALL THE TIME, and it has nothing to do with feeling depressed. It can be really annoying. Sitting in a coffee shop reading a touching story and crying.
This love thing isn’t exactly correlated to God saying no, but it feels related to me, even if I can’t explain why. Maybe it has to do with that fact that I just didn’t feel all this love in me before. Sometimes it feels that my heart is going to burst if I can’t let some love out. I also think that sometimes broken people have the biggest capacity for loving. When God said no to healing me, I broke. This whole thing has broken me. Now, I just want to be there for people who are hurt or broken, because I have been there. I AM there sometimes.
The strange thing is that at this point, sitting on the couch, sweating in my hot second floor apartment, I’m ok with it. Sure, some days I’m angry. Some days I rant at God for making me this way, while most of the people I know are living perfectly healthy lives. Today though, even though I have a migraine and I am spending the rest of my day alone, I’m at peace. I’m not exactly happy, but I’m at peace.
What will I learn in the next 365 days? Most of it will probably be hard, but it will all be good. “We will not all sleep, but we shall all be changed”. I’m looking forward to the change.