Sometimes I think about what advice I would give someone who just figured out they have Chronic Fatigue Syndrome. It's the same thing as imagining what I wish someone had told me six years ago. I have made a lot of mistakes in the course of this illness, and I desperately want someone else to learn from them.
A lot has changed in the last six years, but when I first got sick, there wasn't a lot of information. I didn't think about it in a very logical way. On one hand, I read a lot of sketchy Internet information about cures and ran around to doctors and naturopaths trying to end it. On the other, I bought in to the pseudo-scientific mind-body medicine that essentially says: this is all your fault. I thought that this disease was just my particular form of insanity. I looking for subtle, psychological causes, and overlooked the more physical ways I could manage symptoms, like pacing and rest. There really are things we can do to feel better. Here are a few:
0. Be brave. This is probably the first thing someone should tell you. They should tell you this while hugging you or holding your hand. This is serious. You are very sick, and you are going to be for a long time. You are going to have to give up a lot, and you are going to be very scared and bitter and desperate. You should expect this. An extraordinary amount of strength is now going to be required from you, but you can do it. Get ready to change.
1. Don't Push Yourself. Don't do it! This is what someone should yell at you over and over, maybe while you sit on on an examining table in a thin paper gown. I think it takes a lot of drilling to get this understood. We don't live in a society that values self-restraint, or peace, or good judgement. So much of our self-worth is tied up in our achievements, whether that means a career or a degree or the ability to dance all night. We don't know how to be quiet or alone. It's hard, but if nothing else, maybe fear will motivate you; if you don't live within your new limits, you will get worse. If you live within your limits, you might get better.
2. Strive for Acceptance. This is terribly hard, but necessary. It doesn't mean we think we'll never get better. Why would I emotionally prepare now for five years in the future? No one knows what the future will hold, all we know is that it definitely won't be what we expect. When I get overwhelmed with this illness, it's rarely for the present moment. So don't get ahead of yourself, calm down, and see if you can accept today. One thing I've found to be true is that emotions are finite. Time and again I've been pushed to way beyond what I thought I could handle, and realized that I was handling it, even though it hurt terribly. Gradually, you work through the despair, the anger, and the grieving. They are finite, and I believe that feeling them fully can be the same thing as letting them go.
3. You are Not to Blame. This should be obvious, but it's not. Maybe to a certain extent everyone is egocentric enough to believe that they somehow cause the external events around them, but we with a disease that science hasn't caught up to yet are particularly susceptible. Illness is a force of nature, like a tropical storm. It happens randomly, to anyone, and no matter how hard you prepare, it might really get you. Stress definitely affects this illness, so pay attention to your actions, but don't worry about some insidious little worm in your subconscious. I assure you, you are not making yourself sick.
4. Get Religious. That said, "Why do bad things happen to good people, i.e., me?" is the question of the ages. I don't think there is any truly satisfying answer, but some people collapse under the weight of suffering, and some use it to transform themselves into saints. I can't recommend Buddhism highly enough for both a philosophical framework for suffering and a way to deal with it. I'm also pretty into Saint Theresa and Peruvian shamanism. Whatevs. But now that we have time and solitude, which are gifts many people don't have. Let's not waste them.
5. Get Artistic. And you know what else you can do with time and solitude? You can make art! And in fact, you need to. We can't just sleep and watch NBC sitcoms. We have to do something productive; the will to work and create is a human imperative. It doesn't have to be great art. God knows we can't afford self-doubt and hyper-criticism now. There's a lot of joy to be found in creating things, in expressing ourselves and developing ourselves. In this area alone we are almost not disabled. If you need help getting started, an online class or starting a long-distance project with friends is a good way to keep going.
6. Make a Schedule. I've always been bad at great swaths of unstructured time, and I think that having specific goals and specific time limits in which to accomplish them is essential. Try to be self-disciplined and make yourself put down that unchallenging entertainment/time-killer and learn French, make electronic music, write your memoirs, meditate, or whatever it is you really want to do. Tell yourself that you will do this-and-such from 3:30 to 4:15 and then follow through. The sense of accomplishment will be worth it.
7. Be Wary of the Internet. The Internet is great for us and expands our worlds considerably, but there are still places in that expanded world that we shouldn't go. While tooling around searching for keyword "CFS" you will find some truly horrifying repositories for human misery. These are the slums of the Internet, the twisting dark alleyways where you don't want to get caught alone at night. They can be the vitriolic battles fought in the comments sections of CFS articles, blogs of despair and desperation, or pseudo-science websites promising miracle cures. I'm hesitant to imply that people in pain (and people systematically discriminated against) should refrain from speaking their minds, and my writing isn't free from negativity. However, I've found that these websites both suck me in and make me miserable, and I do my best to avoid them. On the other hand, I really want to believe that the Internet can be used as an organizing tool, and to get funding and research, healthy people really do have to know how sick we are and the toll that takes. I guess the optimum here, like in most things, is balance.
As you could probably tell, this is as much me giving myself a pep-talk as much as it is me imagining myself as the wise old sickie giving advice to someone else. There are a lot of issues I didn't talk about, and I realize now that I am incredibly lucky that two of the most insidious secondary aspects of CFS don't affect me. My family and close friends never abandoned me, and since I moved back in with my family, I don't have to worry about money. Those are huge issues, but I don't feel qualified to give advice about them, a fact I thank God for every day. The rest of these little chicken nuggets of wisdom are personal and hard-won, and I do wish I could send them back in time six years to that 22-year-old girl terrified of illness and unsure of what to expect.
