This is where I want to speak specifically to those of you who live with fibromyalgia, or any other chronic illness.

It's such an unfair disease. The hours of sleep lost, and even the hours of consciousness lost due to fibromyalgia, are irreplaceable. The events missed out on, the disappointed faces and conversations with friends who struggle to understand what you're going through, and the moments spent paralyzed in unstoppable and unbearable pain are a constant reminder of the disease lurking in our bodies. But revolving our lives solely around our chronic illness isn't living.

Over the past few years, I found that the best way to manage my pain is keeping my stress levels down (art therapy mostly). This is also very important for people with lupus to do, as stress wears down our immune systems and makes us even more susceptible to infection. I surround myself only with people who are supportive of me, and if not that, then they are at least respectful. It helps a lot to not constantly be stressed about being judged or disrespectfully criticized by people you're sharing with. About a month ago, I took the time to delete 600 people on Facebook and it has taken a load off me. I'm sure that seems ridiculous, but I think a lot of people subconsciously fear judgment from some people on their social media friends lists. I typically do not share much on Facebook about me being sick as I've gotten older, mostly due to the amount of accusations I was given for seeking attention in high school when posting practically every other week that I had gotten sick again. Of course people thought I was lying; in high school the assistant principal had to create a way for me to "earn" more excused absences so that I would be able to graduate, as I had exceeded the allowed amount for the year when there was still two months of school left. To other people, I was looking for attention in posting on social media when I was sick, but it was simply an expression of the loneliness I felt, and hoping that I'd find someone else who knew what it was like, whom I could connect with.

Stress and fibromyaglia are very closely tied. That is a lot of the reason why so many people with it end up on disability: the stress associated with work causes so many flare ups that it eventually becomes completely debilitating and their body cannot heal without complete rest.

My rheumatologist told me that people with lupus need more sleep than the average 8 hours recommended. When I was diagnosed with fibromyalgia, they recommended 10-11 hours of sleep every night in order to reduce my symptoms. 10-11 hours?? Between work, school, at least a semi-normal social life, and other things.. it's pretty much an impossible thing to do as adults, how are we supposed to survive in a world where money is so important to accessing adequate healthcare when we aren't well enough to make money?

Adjusting your sleep schedule is among one of the most important things in managing a chronic illness. However, that comes with sacrifices, like not having the "normal" college experience, and less time spent "relaxing" (or what we think is relaxing) on our phones/computers; but I have found so much more happiness in doing what is best for myself, rather than what is most enjoyable. I've gotten out of the habit (which I really need to get back into haha), but I used to stop using electronics at least 45 minutes before I went to sleep. I mean, like, phone plugged in far away, grab a book kind of thing.

Our brains still process what we see on our screens for another couple hours after we stop looking at it and fall asleep. So if you're like me, and lock your phone right before you close your eyes to go to sleep, you're taking away true, restful sleep. Your brain stays hard at work and it actually makes you feel more tired the next day, so I'm sure you can imagine what the habits and cycles of "netflix before bed" can do to a person's body. And that's a regular person; we aren't regular people, we take things twice if not three times as hard as someone not living with fibro, and a bad sleep schedule/unhealthy sleep habits can be extremely damaging.

One of the most important things I've learned is that it's okay to be selfish, and you need to be selfish when you are living with something like this. Find a schedule that works for your health and if anyone complains about it, tell them that it is not something that you can control. If they are still upset and don't understand, let them be ignorant. Letting go of how other people interpret my illnesses has made it so much easier for me to cope with them. It's hard because you want other people to understand just how bad it is so that they stop picking on you, but it just isn't worth the time. Focus on you and your health and happiness and worry about others after.

I think that the most damaging thing that I did while learning to cope with both lupus and fibro was join online communities. While it's nice to have people that understand my experiences to talk with, it almost makes it worse to constantly see what everyone is going through. Fibromyalgia is incurable right now, and it makes us all miserable, and putting a bunch of miserable people together in a Facebook group/Reddit typically isn't going to yield positive results. I liked going on those boards for tips on how to manage my symptoms, but seeing how hopeless (and rightfully so) fibro made some people only made me dwell on my own illness more, and feel sorry for myself.

My symptoms genuinely were worse when I was part of these communities, and I think it's because I spent so much time thinking about them. Whether it was psychosomatic or just stress-induced, who knows, but I do know that once I stopped obsessively reading about other people's experiences with their fibromyalgia, I did feel much better. It's a community where everyone is free to talk without fear of being judged, but sometimes I just wanted to shake people and be like, "Stop hyperfocusing on your illness!!!!" because I do think that documenting a play by play of how horrible your health is, without countering those experiences with gratitude for other areas of your life, only worsens the hopelessness that fibro brings. It's so important to figure out what your limits are, in terms of going out with friends/family, and knowing when you really need to stay home and rest. But identifying with the illness TOO much is dangerous, because suddenly, you don't have fibromyalgia, but fibromyalgia has you.

I hate to put it like this, but feeling like a victim of the illness (I'm not saying that it's fair to have to live with it) and spending so much time and energy expressing how terrible it makes you feel will not empower you, it will drain you. When you use that anger and energy to kick fibro's butt, even if it's in bed covered in ice packs, you're doing something much more beneficial for yourself. I hope that one day the fibro community realizes how much power we still have with this illness. Fibromyalgia will suck the energy out of you, but don't let it suck the life out of you. It's okay to hurt and to take time off as often as needed (which could be a lot), but don't look at it as a death sentence. You are more than this illness.

Something that I have not explored with chronic fatigue/pain/fibro/chronic illness is support groups/group therapy. I do find in person groups to be different than online ones because they are usually run by someone who is qualified (like a chronic pain specialist) to provide support for people living with these illnesses. Rather than letting all of the talk be negative, group therapy usually lets you get everything out that you need to, but then teaches you how to cope with it. And I think that is super important. If my symptoms start to take over my life again, I will definitely look into becoming part of an in-person group to make sure that I do not fall victim to the isolation that chronic illnesses bring, as well as the self-pity and hopelessness.