Living with the guilt of chronic pain as a young adult

I am 26, female, and I really just want to vent. I am not sure where this is going to go, but there’s a lot on my mind and I just need a safe space where I can get everything out to have a lighter heart, and maybe feel less pain, because strong emotions trigger pain for me.

My official diagnosis is chronic costochondritis. I’m not sure if that’s the only diagnosis I’m going to have because I have an appointment with a rheumatologist next month. When I go, I will find out why I have been having this pain for 11 to 12 years—whether it is a symptom of something else, mechanical, stress/trauma-related, or autoinflammatory.

As a young adult, you can imagine the burden living with chronic pain comes with when you’re unable to do certain things compared to your peers. Because my condition is inflammatory, it doesn’t just affect the part of my body where I have pain; it causes me to feel unwell all over and brings extreme fatigue. With chronic pain plus extreme fatigue, there is a lot of mental and physical stress. It is also hard because right now I feel like a burden to my mom. I live with her and cannot work, because my mind is preventing me from going out there and executing the tasks I need to do.

I cannot do anything physically work-related because then I’ll be in pain. I also cannot do anything that requires too much brain power, because with extreme fatigue, trying to concentrate or remember certain stuff genuinely feels like it’s causing my brain to shut down.

I am a clean person. I like to organize, and normally I would be all over the house cleaning and doing basic tasks. Recently, I cannot find the motivation nor the energy to do simple things, which honestly sucks. I can’t even find the strength to clean up my room, and it needs to be cleaned. I drink coffee for energy, but it takes away from my energy, causing me to feel burnout or sleepy, and that’s a waste of time because I am risking a lot. I am risking drinking caffeine for energy when it also contributes to my pain.

I don’t think that I can force it anymore, but I feel very guilty. By being laid-back, I’m just allowing my mom to take on so many responsibilities. I feel like a burden, incompetent, and like I should be doing more, pulling my own weight, telling myself "oh, it’s just pain, suck it up and push through it." It is very frustrating, especially because what I am dealing with is an invisible illness. People around me cannot know that I am not feeling well unless I tell them. Whenever I voice that I am not feeling well, it feels like I’m complaining too much. To be honest, people don’t always want to hear that you’re not feeling well every single time you talk; for them, it is mentally draining. So sometimes, even when you’re not feeling well, you have to suck it up, pretend like you’re OK, and just mask.

Currently, I am dealing with feeling guilty for not being able to bring in income to support myself and my mom. I know that she’s tired and really wants to stop working, but she doesn’t have anyone to finance her. I feel so guilty that I cannot help her, and like a burden because she’s doing everything for me. I feel incredibly selfish that I am allowing her to do this, even though she’s not complaining, because I know that I am old enough to do certain things.

It is hard because people don’t understand. Where I am from, we are not educated enough about anything outside the norm. If I go to someone and say, "I have costochondritis," I do not expect them to understand what comes with that, because it is more than just chest pain. Even if they research it, I cannot expect them to understand the severity. For me, it is very difficult and comes with a lot of pain and mental strain.

I cannot cry because it causes physical pain, but if I keep everything inside, it causes a buildup that leads to even more pain. So whether I cry or don't cry, I’m going to feel pain either way. I cannot do certain activities because they trigger pain. It’s just a lot, and there’s so much more I want to vent about, but this would be too long. This is just the tip of the iceberg of how I am feeling and the guilt that I’m going through.