Adherence is essentially described as the act of doing something according to a particular rule or a standard. Adherence to (or compliance with) a medication regimen is commonly defined as the extent to which the patients take medications aligned with the regimen prescribed by their healthcare providers. Patients with sickle cell face problems with their medication, which has to be taken every day for the rest of their
lives in the majority of cases.

As a sickle cell patient, I am always struggling to find the motivation to take my daily-recommended drugs. I have expansively read discussions about others with chronic illness in search of motivation, but this doesn’t seem to work for me. This lack of motivation, is always a big concern with me, as we are aware that we need to take our drugs but it is challenging to find the right motivation to take the drugs. It is probably for this reason that we don’t see the benefit of taking our daily-required medicine, immediately. For example, with my painkillers medicine, which I don’t have to take every day except when I am in pain, I notice a direct benefit. My pain immediately goes away or it may go away after a number of hours or days. My mind knows that I don’t have to take this drug forever so it is convenient to continue until you are fully better.

To add to ones worries, the prescriptions drugs are expensive and one has to justify to oneself the value of spending this amount of money on drugs, as the immediate benefits are not visible. The cost can be a major factor contributing towards the medication non-adherence because when you can’t afford to fill your prescriptions, you might decide to take less than the prescribed dose. This is aimed at making the prescription last longer even though we know very well that for best results from the prescribed medication regime, it is essential to consume the medicine as instructed. Also, it is evident that the majority of us do not follow the advice of health-care provider on how to take medications. This may be attributed to a lack of clarity and ambiguity on how to take the medicine, especially when we are prescribed several medicines with different schedules. We tend to forget that this is something we have to do because we have made it a part of our routine for years and thus it simply gets boring and one just wants a change.
It is very challenging to take several medicines with different schedules; like I might have to take some in the morning, or afternoon at a specific time, then again in the evening. This, in turn, can be extremely weary and time-consuming. In addition, there are also unpleasant side effects with certain medications that also add to the drudgery of medicine taking, when you are not able to perceive the immediate benefit of the drug. Let me share, that this lack of immediate working of the medicine or any visible relief is one the most common reason, why I am not consistent with my daily medication routine. But there is still hope and here are some tips that I have discovered to ensure that I take my medicine daily. This is aligned with particularly knowing in my mind that adhering to the prescribed medication program is important to control my sickle cell disease. Moreover, it helps in treating any temporary conditions that I might have and also in improving my overall long-term health and well-being.

I have now made a habit of these tips and incorporated the same into my lifestyle. Here is a quick download on my tips:

  • I inculcate a good relationship with my pharmacists because I find them very helpful – particularly when it comes to asking questions about the drug benefits with an explanation of the medicine schedule.
  • Every night before I go to bed, I bring out and keep aside the daily medicine for the next day, including both morning and evening dose. Thus, I try and take it at the same time in the morning and evening.
  • When I wake up in the morning the first thing I do is drink at least two large glasses of water, then I have essentially included my medicines with breakfast in my daily routine and in the evening I take the medicines before going to bed.
  • I also maintain a weekly medicine container for morning and evening and have set a timely reminder on my phone on when I should take my dose.
  • To maintain a consistency, I try and refill my medicine container at the same time each week. For example, every Sunday morning after breakfast.
  • It is hard to keep a routine when traveling and in my next blog I will be talking about this. However, when I am travelling, I ensure that I carry enough of my medication, plus a few days extra, in case my return is delayed or I have to stay a bit longer.
  • Another very important thing to do is be consistent with the medication storage. So, always try and keep your medication in your hand luggage, particularly if you’re flying to avoid lost luggage problems.

I hope you found this blog about the issues faced by patients’ in adhering to their medication when living with a chronic condition to be helpful. Also, I wish you are able to use some of the information I shared with you. Till next time

XO AW
ANNE WELSH

Having sickle cell has somewhat changed my life. It is hard to explain to someone with no idea of the daily struggles we face. It is an everyday haul with the pain, the ailing feeling and the contradiction of feeling awful on the inside whilst look perfectly fine on the outside. Definitely, more needs to be done to help the sufferers cope with these daily struggles especially when it comes to dealing and managing their pain. The society at large, imperatively needs to understand the daily struggles we face and learn to be less judgemental when someone with an invisible illness tells them that they are unwell.

The truth is that the majority of times we feel guilty for being in this position and not being able to fit in. We feel very alone with our limitation of not being able to do all the things our friends and family are doing. We feel depressed and anxious as we are unsure of tomorrow. The truth is that we are in pain during the sickle cell crises, and this makes it difficult for us to get out of bed, make work plans or have a normal life. We never remember our first sickle cell crisis, because there are so many of them. Sickle cell is never predictable. In addition, keeping fit can be a challenge and sometimes with our condition even doctors fail to understand what we are going through, especially when you visit a doctor who doesn’t have an understanding of your condition.

I remember when I first understood the gravity of my struggles of living with sickle cell it was so overwhelming that I had trouble managing them. A lack of understanding of the associated pain meant that I was daily in and out of the hospital. This was because I wanted to fit in and engage in activities similar to what my sisters were doing, which, in turn, caused me great harm. This behaviour also made me quit a job the first day, after hours of being there – as my body was in shock. The manager could not comprehend why I needed my desk area to be at a set temperature. I also noticed that several people avoided me as I couldn’t keep up with their demands.

But, the more we talk about these issues, the less we feel alone. We need to exploit both online and offline avenues to increase this information sharing. Also increasingly this dialogue informs an increased number of people around us of a better understating of how we are feeling. And so, I will never stop believing in the power of talking and sharing information on this rarely-talked about disease.

Invisible illnesses are real and the society needs to understand that although we might be perfect outside, a closer look inside will tell a different story. Albeit, once we find ways to get our loved ones and carers to understand our daily turmoil, our struggles tend to get much better, with a massive improvement in treatment.

The disease has really changed me, and many people just don’t understand it and can’t handle seeing you that way. Thus, this warrants a need of love, hope and motivation for the sickle cell sufferers.

Really, for this is all we need. Love from people, hope for tomorrow and motivation to go through every day.