"They don't want to take their medication. What do I do?" Lets talk about pill fatigue!
A few days go, on social media, I shared a post about Pill Fatigue. On most parts, I thought I was rumbling, and not realizing that it’ll get a lot of attention.
As I shared before, I started taking my ARVs early 2017. I had been diagnosed in 2013. Because of the regulations then, I didn’t need to take treatment because my CD4 count and viral load were considered “healthy”. Things changed late 2015, when the WHO recommended that all countries adopt the “Test and Treat” policy for all people living with HIV. This meant that everyone that has tested positive for HIV should start treatment, or rather is it recommended that they start treatment. Before, only people with a CD4 count of less than 350 started treatment.
To some degree, I think this was a way of being able to afford medication because we all know that the HIV treatment budget is one of the largest in the country.
Back to me, immediately after hearing these news the doctor informed me. I plainly refused. And as I have mentioned before, I knew taking the pill was a lifetime. I didn’t want the daily reminders. I wasn’t ready. I only started treatment beginning of 2017. Looking back, I don’t regret that decision. Of course I was fortune because I was still healthy and my numbers were acceptable by standards of that time. Taking treatment when you’re not emotionally ready can prove to be dangerous. Some take too soon and they end up stopping. I have explained the dangers of not adhering to treatment and the consequences of it.
Talking about treatment, there’s a lot of advocacy around adherence. Treatment adherence refers to the extent to which a person's behavior — taking medication, following a diet, and/or executing lifestyle changes — corresponds with the agreed recommendations from a healthcare provider.
When it comes to HIV, making sure you’re taking your ARVs every day for the rest of your life.
While I admire our efforts to make sure that people live longer by taking their treatment, I wish we would also talk about the different stages we sometimes find ourselves in. I want to talk about Pill Fatigue. Its when, for one reason or another, you’re just tired of taking your medication. It’s not that you don’t know any better. You are well equipped and know the benefits of taking the medication but you’re just tired. You’re emotionally drained. And you don’t care what happens next. What you’re sure about is that you don’t want to take ARVs anymore. It happens.
When it happened to me the first time, I didn’t know what it was. I thought I was being offish for no reason. I noticed particularly how I would be so drained every time I finished one prescription. I dreaded the whole process of having to visit a doctor, to write me another prescription, and going to the pharmacy to fetch my medication. It seemed like a lot of work. Suddenly, I would have so many thoughts like, “Arg, maybe one day won’t hurt. I can fetch them the day after”.
Judging from the post I shared, I know I’m not the only one who has felt this way. It may not even be with ARVs. I read so many stories about people feeling the same way about antidepressants etc. The mental struggle is still the same.
The reason I felt so strongly about sharing this video is because I have found that there’s a lot of stigma around people who don’t want to take pills, or stop their treatment abruptly. You hear so many things.
“I don’t understand how they could be so selfish. How could they not think about their children?”
“Why are they not fighting for their life?”
Here are some of the reasons people stop taking their treatment:
Patients may be frightened of potential side effects. They may have also experienced previous side effects with the same or similar medicine. Additionally, patients report not taking their medication because they may have witnessed side effects experienced by a friend or family member who was taking the same or similar medication. From seeing those side effects experienced by someone else, it may have led them to believe the medication caused those problems.
If you remember the first dosage of ARVs, and one of the biggest arguments of our government for not introducing ARVs - it was because of the severe side effects people experienced. Some were not even sure whether they were passing away because of the side effects or the actual virus. That’s how bad it was. As educated as I was, moreover in 2017!, I still had fears of the side effects and how I would be able to explain them to my family.
A major barrier to adherence is often the cost of the medicine prescribed to the patient. With ARVs, the cost relates to the emotional cost of the medication. The thought of going to overcrowded government clinics, with lack of privacy and overworked clinicians who pass on their unsolicited advice, its can be a lot.
- Lack of symptoms
Patients who don’t feel any different when they start or stop their medicine might see no reason to take it. Additionally, once a patient’s condition is controlled, they may think the problem has resolved and may discontinue using the medication.
This is very common with TB and HIV. They are the most dangerous diseases known to mankind. Unlike diabetics, where your body immediately reacts when you don’t take insulin, HIV is very patient. You could be fine for months, some even drag it for years without treatment. And it takes you out when you least expect it. And sometimes its not even HIV that kills you, it’s opportunistic diseases such as TB, pneumonia etc.
- Too many medications
When a patient has several different medicines prescribed with higher dosing frequency, the chances that they are no adherent increase.
The Covid-19 pandemic posed another challenge for us. When I went to the doctor. Although my numbers were excellent, the doctor still asked me to take precautions by adding multivitamins to my medication. Every night, I didn’t only have to down my ARV pill, but 3 to 4 other pills. I was exhausted.
- Mentally tired
From all that I have explained above, I think being mentally tired of taking pills takes the cake. Its one of the biggest challenges because unlike the other reasons, its take a lot to change someone’s state of mind. It doesn’t matter what you say. When they have told themselves that they won’t take their pills, they won’t! You could set their alarm for them, ask nurses/social workers to speak to them, hide their pills in their food…it won’t work, because they’re tired. Taking the pill is a reminder of their mistakes. Taking the pill reminds them of their unpleasant past. Taking the pill is a reminder that they’re HIV positive.
While a lot of people were sharing their stories on that post, I was moved by those that shared their own experiences of how they lost loved ones due to non-adherence. Years after their family members passed away, they felt guilty because they feel they could have done better. They should have done better. Some didn’t even know that their relatives were infected until they were in their deathbed.
In a situation where they know about their status, the challenges of adherence have proved to be unbearable.
I just wanted to share a few things with you. I’m about to give you hard truth but I promise it’s coming from a good place.
- Remember, ALWAYS, that it’s not about you.
This is a hard one to swallow but we have to face it. Friends, on social media, have shared so many stories of how a mother, sister, brother, suddenly stopped taking treatment and passed away. They’re so hurt. They just don’t understand how “they could give up like that”.
Let me share something quickly. My dad was on chemo for more than a year. In addition to the Chemo, he was told that he needed to make regular visits to the hospital for the doctors to drain water from his lungs. The first cycle was okay. It actually seemed that everything was a success, only a few months later he was told he needed to go back to drain more water. The constant pain he was in was unimaginable. There was a point where he told the doctors and my step mom to stop the process. He couldn’t anymore. It was too much. Here’s the thing, from afar, yes we understood where he was coming from. He was tired, but at the same time we couldn’t understand why he would give up like that?
While we may feel the pain of losing a loved one, but its not compared to the pain they may be feeling.
- “But they haven’t disclosed to me. What do I do?”
The disclosure topic is very vast. It’s complex. I would like to make this more personal. One of the reasons I delayed disclosing my status was because of how HIV was viewed at home. There was a level of judgment and stigma. One of the reasons people will continue shying away from disclosing their status is because of how HIV is talked about at home, or lack of.
Is it welcoming?
Is there a lot of judgment for people that are living with HIV?
Do you think the current environment encourages any family to feel free if they ever found themselves in such a situation?
- Why don’t they want to take medication?
With all that has been highlighted above, what are some of the reasons your loved one may be defaulting? Have their fears of side effects been properly addressed? Have you found out if the doctor can change their dosage? If they’re shy to take medication from one particular clinic, is there an opportunity for someone else to take it for them? Or change the clinic? Is this person seeing someone they can speak to? A professional they feel comfortable with? Explore other available options.
While it is true that the end of the day it is ones responsibility to take their medication, I know how much those acts mean so much to us. During those times I’ve had my moments, I have relied heavily on my husband. He gives me my pill every night. When he sees that my medication is finished, on his way from work, he would pick up another prescription.
But let me say this to you. Do not beat yourself up for what you could have done. Or underestimate what you’re already doing. You are doing all you can, with what is available to you. While this is new to the patient, it’s also new to you. Be easy on yourself. I know there are times were you probably want to forcefully open their mouth to take the pill. But you can’t. You’ve never had to deal with a situation where you even wished you could hide medication in cooked food, shakes, drinks…anything, so they can take it. Just when you think you have made progress, they vomit all that medication.
I’m going to repeat this, you are doing everything you can.
To those experiencing the fatigue, I get you. I am You. You are ME.
I want you to remember two things:
- You live to fight another day. It is not a mistake that you’re still here. When I have one of those moments, I remember the time where I wanted to commit suicide. I didn’t see any reason to live. But 7 years later, I’m still here. And the strength that carried me all this time, will surely carry me for the rest of the journey.
- Continue healing. The reminder is an indication of something that has not yet fully healed. You don’t need to prove to anyone that you’re strong. As strong as I think I am, but I will be the first to let you know that I do regularly have my moments. My breakdowns. And I allow myself to feel that way. Acknowledge and work through it.