32 Things About Taking Medication for Mental Illness People Don't Talk About
Editor’s note: This piece is based on the experience of individuals, and shouldn’t be taken as medical advice. Please consult a doctor before going on or off any medication.
We know you shouldn’t be ashamed of taking medication for a mental illness. We know it doesn’t make you weak. We know it’s a treatment option a lot of people find beneficial, while others don’t. It’s a choice, an option and it’s just as valid as taking medication for any other illness.
But let’s get real: What are some of the things about taking psychiatric medication we don’t talk about?
Prescribing medication for our brain is far from a perfect process, and while we want to spread the word that it shouldn’t be shameful, it’s also important to acknowledge the complications that come with the process.
So, we asked our mental health community to share one thing about taking psychiatric medication people don’t talk about.
Let’s talk about it. Here’s what they had to say:
1. “They don’t tell you a medicine might work for a while, maybe a year, then suddenly it can stop, and you’ll have to start all over again and find a new medicine. Then it could take months to find another that works.”
2. “What I take doesn’t cure my illness. I am not ‘all better.’ Does it help? Yes, absolutely. Am a better? Yes, a bit. Does that mean I’m OK, back to normal and no longer struggling? Not at all. Not even close. No. So why do I take it? The little bit it does help is a lifeline I can’t do without.”
3. “It’s OK to take medication! Don’t let stigma scare you into not taking them. That’s the only thing I wish someone explained to me beforehand.”
4. “They don’t talk about what it’s like coming off a medication. Whether it’s coming off completely or coming off to start on a new medication, both instances leaves us so incredibly fragile. Our entire brain chemistry is being altered in a way we haven’t experienced in a long time, if ever. No one talks about all the trial-and-error it takes to find the right medication and the complete mental agony that goes along with that process. The fear of not being able to trust your own mind. The uncomfortable feeling of needing to precisely articulate your feelings to your doctor, therapist, psychiatrist, etc., when you’re not even sure what it is you are actually feeling. No one talks about how hard it is to function on a daily level while going through all of this. The amount of time that needs to be taken off from work to visit all said doctors listed above. The interference it causes in driving, speaking without forgetting words or getting confused, and being available for all of those around us that need us. And no one, no one, talks about how we are treated by EMTs, police officers and other emergency personnel when in a crisis situation.”
5. “It takes time to find what works best for you. The frustration of getting through side effects when you already don’t feel well. And then the possibility that it will stop working after awhile, so you start the cycle over again.”
6. “It’s missing just one single dose of my medication and going on a downward spiral. Like I am on an out-of-control roller coaster I can’t get off of. I know I’m out of control, but there is nothing I can do to stop it.”
7. “Medication alone won’t work. You must be diligent in pampering yourself. Go for massages, take vitamins, naps, exercise, yoga, plan time with friends, find a good therapist. And most of all remember there still may be bad days, but do not give up!”
8. “They aren’t ‘happy pills’ and a quick fix as some people think, like once you start taking medication you are going to turn into this really happy person all the time! It just helps me cope and I still have bad days, but I have more motivation and the fog has lifted a bit.”
9. “I think the fact that medication can be life-saving should be highlighted more than ever.”
10. “It takes time to find the right meds and doses. There are side effects that make you think meds are worse than the mental disorder. However, there will be many more days that you feel ‘normal,’ which will make everything worth it. Hang in there, and seek the help you need.”
11. “They don’t talk about how hard it is to find a psychiatrist who works for you and how you shouldn’t settle for one you don’t feel comfortable with just because they have a license to practice. I had one recommend drinking milk and eating turkey as a natural remedy for depression… I’m lactose intolerant, and overeating is one of my primary concerns. He also didn’t think explaining to me the side effects of medication was important. It is important for me because certain side effects can have a negative impact on my day-to-day life.”
12. “My medication limits me from being a ‘normal’ college student because I can’t always drink or stay out late, and people don’t understand why a lot of the time.”
13. “Therapy paired with your medication is important. Your medication can carry you through the worst days and help manage your symptoms, but it’s still up to you to put in the time and effort to be OK.”
14. “It’s OK and almost always necessary to try new medications when you know one isn’t working for you. Not everyone can take the same medication and be OK with it.”
15. “Medication is nothing to be ashamed of. You don’t tell a person with an ear infection not to take their meds because they are strong enough to overcome the infection. Mental illness may not be entirely understood, but it doesn’t mean it’s not real and necessary to be treated.”
16. “Medication can sometimes not be prescribed in an Rx bottle and can range from supplements to medical marijuana. There is something out there for everyone.”
17. “I was so embarrassed to take medication, and now I regret not taking it sooner! The initial side effects were unusual, but they’ve subsided now. It isn’t a miracle cure, definitely not, but it gives you a little nudge in the right direction so you can continue! I actually started my tablets this day last year, and the difference everyone has noticed is like night and day. I have bad days but… everyone does!”
18. “If you have a negative side effect you cannot or will not tolerate, don’t let your doctor ignore it, but don’t stop taking your medication without your doctor’s approval.”
19. “I always knew the stigma with mental health medication comes from all different types of people, but no one warned me I would face stigma from health care professionals.”
20. “People don’t talk about how hard it is to come off them — the physical side effects like chronic pain and dizziness and mental side effects like confusion and extreme mood swings.”
21. “Doctors need to be honest about how long the medication may take to work. Don’t say a week or two when truthfully it may take four weeks or more. Stop belittling the initial side effects. Tell your patients the good, the bad, and the ugly. So many people quit before the meds start working because it can be hell for a month. Strap on your boots and get ready for a potentially bumpy road, but you may just come out the other side and get your life back!”
22. “You’re not told about how to speak to others about it. You’re not told how to explain to everyone outside of your inner circle you really aren’t ‘crazy’ and that you need your medication to survive. You’re not told how to explain it to others so it makes sense to them. You’re not told how to tell people you’re really not a junkie and that you ‘pop pills’ all day so you can function like a ‘normal’ human being. You’re not told how to explain to people that you can’t ‘just be happy’ and that you can’t ‘just stop taking your meds.’ I was however told by my doctor that some people need medication and that it’s OK to be in that situation.”
23. “For people who absolutely need the meds for life, there will usually be that beginning battle of ‘I don’t need medicine, this is mental, I can fix it on my own.’ Stigma will often exacerbate those thoughts. I went on and off medicine for several years before I realized this is a disorder and I need the medicine to help it.”
24. “The difficulty reaching orgasm is one of my most stressful side effects, but is often seen as too ‘taboo’ to talk about. I put up with it for almost a year but couldn’t take it anymore so asked to be put on a different one. It’s definitely a vast improvement.”
25. “Actually, I think it should come with an extra instruction inside the box: for our loved ones to read — the ones who assume because you’re now taking tablets, you should have it together all the time, so there are no ‘excuses’ for not doing stuff. These extra instructions should come with advice on how to pick up your loved ones from the bottom of the well and not tell them ‘you have to try and control it. You’re making yourself ill.’ Also, the instructions should tell them it’s OK if they don’t know what to do, or to say, to help us feel better. A hug and a loving kiss on the top of our head or holding our hand tight while looking into look our eyes is what we need most of the time.”
26. “People don’t discuss the fact that medication isn’t always a cure. It doesn’t make life rainbows and butterflies. It doesn’t turn things around in a matter of minutes. It doesn’t erase scars. It doesn’t clear the memory banks. It doesn’t heal the broken trust or mend the broken hearts. Medication provides the means to allow these things to take place. It is the mediator, not the hero!”
27. “They don’t talk about the fact that some people aren’t helped by medication currently available. No one will admit to me that despite trying a ridiculous number of medications over the past 14 years, none have worked for an extended period of time. In the meantime you get to experience the side effects and/or withdrawal effects.”
28. “I wish someone would have told me how long it takes to find just the right medication, dosage and possible combination with other medications. For me, it took six years to find a medication that did everything I needed without having significant side effects. If you have a mental illness and you had a bad experience with medication, don’t give up hope. It’s like dating. There will be pills that are total losers, pills that make you feel great sometimes and awful other times, pills that are OK but leave you feeling bored and lethargic… every combination. But once you find the one, it will make it all worth it. Trust me.”
29. “It’s not a quick fix, and it may take years of trying, but you’re worth it. You will need to be your own best advocate and do research and more research. And what works one month may need to be tweaked the next. Don’t rule out things like full-spectrum light therapy or yoga or alternative therapies and support groups in conjunction with medicine either.”
30. “It doesn’t matter how many times you hear, ‘a diabetic doesn’t feel ashamed they need insulin so people with depression who need antidepressants shouldn’t feel ashamed either’ — something you still feel defective and like a failure because you need antidepressants, as evidenced by your symptoms when you forget or don’t take one of your so-called ‘happy pills.’ When I forget a dose, my mood changes within 12 hours — I feel intensely sleepy or lethargic, my head spins like there is a swarm of bees in it, my head feels like it will explode and I have trouble thinking straight. It takes several days to get back to normal — all because I was late with one freaking tablet. Life on meds isn’t ‘normal’ or ‘perfect,’ but it’s a much better normal than life not on meds.”
31. “Medications have improved my life so greatly. But it’s taken so much tweaking of them to get me to this point. Another aspect you need to remember is that medicine can’t cure depression, only helps. My best medicine is talking. Know you’re not alone. Try to be the light of someone’s day, even when you’re feeling rotten. The smallest things make the biggest difference. Stay strong everyone, you got this.”
32. “After years of sorting through different medications to find the right one for me, I think I’ve finally got it now. And it’s like coming up for a breath of fresh air. It’s like feeling the sunlight for the first time. It’s the freedom of not having a dark cloud hang over me all day. Yeah, sorting through different meds and experiencing horrible side effects is such a long and unbearable process. But when you finally are able to breath again and feel normal… that is what it’s all about! I haven’t felt this good in a long time.”
*Some answers have been edited for length and clarity.