Cassidy Allen

@cassidymargaretallen | contributor
I have bipolar disorder, anxiety, and ME/CFS.

10 Things to Do When You Feel Hopeless About Your Illness

Nearly nine years ago, I developed chronic fatigue syndrome (ME/CFS) and was out of work (at least, full-time work) for about two years. Finally, I gained the strength to go back — only to sink into a suicidal depression and have to leave after five months. This time, I was out of work for five years, but again, eventually, I triumphantly returned. And again  — oh, and again — my severe bipolar disorder caught up with me, and I was faced with the choice between continuing to physically harm myself and walking away from the office, I quit my job. It was the fourth or fifth job I’d had to leave because of illness. But, I’m going to go back to work again. I don’t have the job yet, but I’m going to find one and fight to keep it with everything I’ve got. Two quotes help keep me going: “The secret of life, though, is to fall seven times and to get up eight times.” -Paulo Coelho “Success consists of going from failure to failure without loss of enthusiasm.” -Winston Churchill Some days, bad days (more days than I want to admit in the context of what should be an uplifting article), I don’t think I’ll ever be able to keep a job. I’ll go back to work and last three months. Without a job, how will I have enough money to live? And I won’t have enough money to have children, and a child is what I want most in life. And when I think this is the future I have to look forward to, I think about killing myself. But, somewhere within, I’m optimistic. I believe things will work out. I can’t imagine this is the way my life is going to be forever. And I believe I have a better shot at overcoming my demons if I believe I can overcome them. So, how can we soldier on? How can we not give in or give up? 1. Work to get better. See the professionals you’re supposed to see and do what you’re supposed to do. In other words, go to the doctor, maybe get a second opinion, maybe get a third opinion, have the colonoscopy, take your pills and stop drinking if the doctor says to stop. First, you should do all these things because what right have you got to complain about feeling bad if you’re not doing everything possible to feel better? But second, right now we’re talking about hope for the future. And it’s a lot easier to believe you can get better if you’re trying to get better. Also, don’t expect your doctor to do all the work. Getting better is a collaborative process. In particular, tell your doctor if something makes you feel better or worse. For example, I once told my doctor caffeine, which is a stimulant, sometimes makes me less depressed. Once I’d told him that, together we agreed to try a prescription stimulant. It was one of the most effective pills I’d ever taken for depression. Prescribing it for depression is outside the box. If I hadn’t mentioned my reaction to caffeine, the doctor would never have gone there. 2. Research. You are not a doctor (unless, of course, you are one). Don’t convince yourself you have a life-threatening illness based on WebMD, and don’t decide how to treat yourself. But, researching your condition is part of the necessary effort to fix what’s broken and move on with life, in collaboration with your doctor(s). Research gives you ideas to discuss with those doctors. When I was disabled by ME/CFS, I read some people with the disease also live with postural orthostatic tachycardia syndrome (POTS), which contributes to symptoms such as lacking the strength to walk. (POTS is when your pulse jumps considerably when you go from lying to standing.) So, I bought a blood pressure cuff and checked my heart rate — again and again. I recorded the results. I presented my results to my doctor, who agreed to diagnose me and prescribed something that helped. Look, doctors are experts in medicine, but they don’t care as much about your personal well-being as you do. You have to stick up for yourself. 3. Research the future. When it comes to my bipolar disorder, I sometimes feel as though I’ve tried everything, but still am unwell. Of course, I haven’t tried everything, but I’ve tried a lot. But you know what gives me hope? The article I read about experimentation toward a new drug specifically for the depressive phase of bipolar disorder. It might be years before that drug comes out, or it may fail in trials and never come out, but one day, that drug or another drug like it is going to be available to people like me. That’s reason to hope that I won’t have to struggle forever. Plus, researchers are investigating the potential of psychedelics to treat depression! Another option is ketamine, famous as a party drug, but now being prescribed to treat depression. The problem with ketamine infusions is most insurances do not cover them, and they cost shockingly more than I could afford even if I had a job, and a well-paying job at that. But, you know what? As ketamine becomes a more mainstream treatment, insurances are going to start covering it, right? Here’s hoping, and here’s hope. 4. Research your future. Being able to picture a future worth fighting for keeps me going. Before I actually was well enough to apply for jobs, I looked at job ads to see what I might want to apply for when the time came. Now, as I apply for jobs, I look forward to a future when I can have children. I research adoption, sperm donation and larger apartments in good school districts. I know dreaming it doesn’t mean it’s going to happen, but I feel more as though it could happen if I’m actively working on it. 5. Mark daily triumphs. Some days, your biggest accomplishment is getting from morning to night without killing yourself. Some days, not giving up doesn’t just mean not giving up on your future. It means not giving up on your now. I have a little bowl and some rocks. Every time I make it through a day I thought I might not survive, I put a rock in the bowl. The bowl of rocks serves to remind me of all the days I have survived despite the agony. If I made it through each of those days before, I don’t have to give up now. 6. Keep your friends close. Not everyone wants to be friends with a sick chick. Not everyone understands what it means to be sick. Ignore those people. When you mention what you’re going through to others, look for the sympathizers, in particular people who struggle with similar ailments themselves. You don’t know how good it feels to commiserate about your boyfriend who left you because of your bad bipolar disorder with your friend who lost a fiancé because she had obsessive-compulsive disorder (OCD). Or to have a panic attack and explain it to a good friend and have her really get it, because she gets panic attacks, too. Plus, when you start to think the future looks bleak, your friends can remind you to keep going because maybe they’ve overcome their demons already. 7. Have a compliment fest. I have a friend who also struggles with mental health issues, and we both at times feel pretty bad about ourselves. So, we have compliment fests. We each text the other one compliment after another. It feels good! If you’d like, you can write the compliments down on a piece of paper to refer to when you’re feeling low. 8. Remind yourself you can achieve by achieving small feats. When you are sick, you’re likely less productive. If you’re like me, you beat yourself up about not being productive enough. You tell yourself you can’t accomplish anything and never will. Remind yourself you can accomplish things, and one day may accomplish big things, by accomplishing the little bits you can now. For example, I watch Netflix in Spanish (with English subtitles) to practice my foreign language skills. I may not feel very accomplished, but I’m accomplishing a little something. 9. Write. Writing, or specifically journaling, is a great way to think through your problems and come up with different ways to approach them. Different ways to conceptualize them. 10. Make a plan, even if you don’t know you can keep it. I am a planner. I’ve bought Christmas presents — for the next Christmas — in January. Once, I marked a date on my calendar as the day to seriously start thinking about having kids. The problem is, I couldn’t start thinking about having kids that day. To have kids, I have to be healthy and have a job, preferably one that pays me enough to feed the kids. I keep telling myself I’ll have kids in two years, three years, but you know what? I don’t know. I don’t know if these plans will come true. What I do know is making plans calms me. If there’s a plan, there’s hope the plan will work. Plus, planning can be a nice distraction. I look up baby names. I look up adoption and sperm banks. I’ll be raring to go when the day I can seriously start thinking about having kids comes. Some people might get stressed out thinking about events they can’t guarantee will come to fruition, and if that’s you, don’t make plans you don’t know you can keep. But, I like planning. And, here you are, maybe just as sick as you were when you began reading this piece but, I hope, a little less hopeless.

Community Voices

Depression – It’s Like Grief, Heartbreak ... and Sex?!

I have spent a long time trying to put the experience of severe depression into words. How can I make you understand how depression feels, when you’ve never felt it yourself?

It’s something like grief, except ten times as bad. It’s something like heartbreak, except ten times as bad.

But you know what else it’s like? Sex.

Hear me out.

Sex, if you think about it, is gross.

Except sex brings indescribable pleasure. You scream, you moan, you see stars, and you can’t put your joy into words. The feeling is overwhelming.

depression brings the opposite of pleasure, of course. It brings misery. But the intensity of the feeling is much the same. depression feels just as strikingly awful as sex feels strikingly good. Actually, it may feel strikingly worse. You scream, you moan, you hit yourself, and you can’t put your terror into words. The feeling is overwhelming.

If you tried to describe sex to someone that had never had it before, that person couldn’t possibly understand how it feels. As I said, sex sounds gross and doesn’t make much sense. depression doesn’t make much sense, either. I mean, why would a person hit herself? If you’ve never felt it, you don’t get it. I get why you don’t get it. But you’ve come to “get” sex. Can you get that depression has the same powerful, crushing qualities?

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Community Voices

Most, Post, and Diagnosed

MOST, POST, AND DIAGNOSED

I started college part-time at age 14. I got my B.A. at 19. I got my M.A. at 20.

Back when I was graduating college, a reporter from my hometown paper wrote an article about me. If I had gone to regular high school (instead of being home-schooled), she proclaimed, I would have been voted “most likely to succeed.”

Fast forward 10 or so years, to 2:37 AM on a … Tuesday, let’s say. I was pacing my apartment. I was tearful. My stomach ached. The psychological pain stabbed deep into my brain. This had happened the day before and would happen again the next day, the next day, and the next. The psychological pain would be so bad that I would call my mother around 5 in the morning, hoping she could console me, and when she couldn’t, she would feel worse that I was suffering than that I had awoken her before the sun.

I had bipolar disorder.

I ended up not working for five whole years because the depression was so severe. When I finally went back to work, happy at last to have some semblance of success on my resume, the particular job made me so depressed I began to hurt myself. I scratched at my veins until the skin broke. I choked myself just long enough to leave me gasping for air. I hit myself more times than I could count. I ran my finger along the serrated metal of my tape dispenser.

I tried to keep going. The symptoms started little more than a month after I had begun the job, and my psychiatrist suggested I quit. I refused. I wanted to work. I made it through day after day, week after week, and month after month, but the depression and self-injury only got worse. Finally, with my psychiatrist’s blessing, I quit the job just five months in.

This wasn’t the life I had planned or ever wanted. I was ambitious, strong, and not afraid of hard work.

But now my work was trying one medicine after another, going to therapy week after week, fighting not to advance myself professionally but rather to stay alive. My job was to get better. If I was a professional at anything, I was a professional patient.

It felt as though I was post likely to succeed. The period in which I seemed destined for professional acclaim was behind me. I looked in the figurative mirror, and all I saw was shattered glass.

I still hope to excel professionally in the future. I still believe my time will come. But “success” looks different to me now.

Overcoming seemingly insurmountable obstacles: that’s what we think of when we think of success.

My obstacles come in the form of mental illness. Sometimes making it through the day without killing myself is a success. And the real success would be to get a job, not get depressed at it, and keep the job for at least a year. That, to me, would be a mammoth success.

I’m not saying keeping a job, any job, for the small matter of a year is anywhere near as prestigious or impressive as becoming an astronaut or a member of Congress. I’m saying I have to define success within the parameters of my life, and that’s what success looks like to me, for now. Maybe someday I’ll be able to aim to be the executive director of a nonprofit or something, but for now, I’ll be happy with being able to keep a job as a low-level coordinator.

It’s also worth noting that what’s prevented me from “succeeding,” in the traditional sense, is my illness. And I can fight doggedly to overcome my illness, but whether or not I succeed at that isn’t entirely in my control. Some people are disabled by depression for life.

Does that mean they can’t “succeed”?

No. It means they can’t be president of the United States or a Wall Street banker. It means they can’t find a cure for cancer or author the Great American Novel. But as I said, for some of us, success is making it through the day.

And being kind. We depressed people sometimes struggle just to be, but in the midst of striving to be, we can always be kind.

I’m not saying making it through the day is as wonderful as developing a COVID vaccine. When a disease strips away at the magnitude of your potential success, it’s devastating. Believe me, I don’t want to go talking about my unimpressive life with all the people that knew me back when I was expected to be “most” successful. I even avoid conversations with friends and family because I’m embarrassed to discuss my present state. But those of us that are ill face greater challenges and therefore deserve to celebrate smaller wins. Berating ourselves for being “post” likely to succeed only serves to bring us down further. I’ve never been one to dream small, but right now I revel in the small success of dreaming at all.

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