Fibromyalgia is exhausting to have. That exhaustion permeates every aspect of my life. It’s always accompanied by its BFF, pain, and dealing with both of them all the time is difficult. It’s kind of like they’re people I have to care for and plan my life around, even though I really don’t want to.
I experience a lot of guilt, because of my personality type, the way I was raised… I just feel badly about things, even though they’re not really my fault at all. Like feeling guilty because someone else is unhappy is ridiculous. I’m not responsible for anyone else’s happiness. I would tell you the same thing.
When it comes to my health, I feel guilty. I don’t want to bother people about it. I don’t want to be unproductive because of it. I don’t want to be a burden or an inconvenience. I’m terrible at saying no, because I feel guilt about it, because if I could help someone, isn’t that what I should do?
I’m getting better at saying no, and not feeling guilty for things out of my control. Breaking the patterns of being there for others and going out of my way to do for others is hard. It feels good to be a good person. It feels good to help people. So it’s easy to overlook how I’m hurting myself. I did that for a long time.
Fibromyalgia takes a lot away from someone. One of the more difficult things for me is to re-evaluate the priority of being productive in a traditional sense. Hard work is valued in my family, along with giving that work to others when they need it. I tried for years to work productively, different times, different places, different scenarios. They all end up with me not taking care of my needs, to the point that I end up in total collapse. The people who love me just shouldn’t want that to happen to me.
One of the more confusing aspects of having fibromyalgia is the dyscognition. So when you’re not taking care of yourself, it’s difficult to make the right decisions, because you can’t think. The term dyscognition is getting more airplay, and I’m glad to hear it. It would be great to have it acknowledged as a symptom by more people. I used to be able to think more clearly, more often, more consistently. The people in my life know that I’m intelligent. They see me as capable. So obviously, I wouldn’t make a poor decision. They have no room in their idea of me for the mistakes I make because of dyscognition. And trust me, being mad at me, and stressing me out over it, doesn’t help.
The people in my life are used to expecting things from me, and I’m not sure how to change this. As part of simplifying my life to take better care of myself, and minimize my symptoms and flare ups, I need to be accountable for less. But my heart just wants to take every problem and absorb it to make things better. Saying no becomes more complicated when I can’t think straight. In an effort to protect myself, I’ve gotten quieter. I just stop talking. I write my thoughts out when I can. I have to take time to respond to things. Meanwhile, everyone expects you to get everything immediately, and get it done, immediately. I hate talking on the phone, because I just get confused. Having sensory sensitivities makes talking on the phone difficult when I don’t feel well. I wish some of the people who want things from me would understand. I don’t want pity or sympathy, just patience. I think people lack patience today, more than ever. But I can’t help that sometimes I just can’t make sense of things. Numbers, sentences, concepts I could normally discuss just disappear from my head, and it feels like a thick fog is blocking me from everything. (Hence the term “fibrofog”) Sometimes I read a text, and an answer is warranted, but it takes me a long time to make sense of it, reflect on it, formulate a response, have someone re-read it for coherence, and finally send it.
Sometimes, people expect things from you, and it has nothing to do with you. We play into other people’s patterns. It doesn’t mean that we have to, just because we know how to fit into their negative pattern of behavior. Sometimes, people are demanding. Sometimes they’re rude. Sometimes they’re angry or hurtful. You’re not required to answer to any of these things. You don’t owe anyone a response or explanation. Especially when they don’t try to understand.
I’m working on how to change these aspects of my life. I’m embracing the power of NO, because it’s really a YES to myself. I’m also learning not to feel guilt about that. It’s not selfish, it’s necessary.
If you struggle with illness, guilt, and the expectations of others, weigh in below 😉