The Reality of Taking Medication With Chronic Illness

I am on several medications for both my physical and mental illnesses and I am not ashamed to say I require medication for my safety and quality of life. For example, I have epilepsy and require anti-convulsants to ensure I am tonic-clonic seizure free to prevent further brain damage from this type of seizure. I also require anti-anxiety medication to get my OCD to a managable level where I can leave the house.

I have tried hundreds of medications over the years for various issues, as well as natural and over-the-counter methods to try and manage my symptoms, not all of them successful by any means. And I know a lot of people who also need to be on medication for a variety of issues. There is a stigma with it, especially when it comes to psychiatric medications. However I think sometimes people need help to alter their brain chemistry so they can do their best to live their life. I strongly believe stigma often comes from misunderstanding and lack of knowledge, so here is some insight to what it is like.

Chronic illness often involves taking multiple medications or having tried them, as well as many alternative or physical therapies. Chronic illness isn’t taking pills for the fun of it or because you want to be on tablets every day.

It is spending 40 minutes filling your pill organizer each week, and spending hours counting and making sure you have enough of each medication when you go on holiday/vacation, including spares to cover any change of plan or delay.

It’s going back and forth to the doctors or pharmacy to get prescriptions filled, to the point they know you by sight or name.

It’s ending up with cuts all over your hands from endlessly popping the sheets of pills or callouses on your palms from repeatedly opening bottles.

It’s having to cram your other items into your hand luggage around all your medication when you travel if you’re not allowed a “medical bag,” because you can’t risk it getting lost in your checked luggage.

It’s not being able to spontaneously stay over at a friend’s if you don’t have your medication.

It’s becoming extra unwell if you can’t take your medication due to food poisoning or other sickness and having to risk vomiting in order to try to get your medication down.

It’s having to check every over-the-counter item you take (e.g. cold and flu remedies, vitamins) in case it interacts/lowers your seizure threshold/makes your blood concentration of certain chemicals too high.

It can mean getting bulk deliveries of catheters or saline and accessories, or having piles of needles and testing kits and drawers full of varying syringes and lines.

It’s knowing the brand and original names of hundreds of medications you’ve tried and the various doses and methods.

It can mean having to accept that despite your medications you still have your symptoms, just reduced.

It’s knowing and often being the 1/100 who experiences the horrible side effects, or needing additional medications to manage them.

It’s potentially having to decide not to take a medication and therefore accept living with a symptom, because of the risks, addictive potential and/or side effects.

It’s having to avoid certain foods or alcohol because they interact with your medication.

It’s dealing with weight or appearance changes as a result of side effects and managing the body image issues that often come along with that.

It’s having a favorite/nominated pharmacy and piles of repeat prescriptions.

It’s being able to reel your medication list off the top of your head and know which medications you’ve tried before and have been unsuccessful, often better and quicker than any of your medical professionals can.

It might mean being best buddies with your doctors or your pharmacists, or they may be your worst enemies.

It often means having piles and bagfuls of recycling or rubbish/trash from varying medication boxes, leaflets, bottles and pill packets.

It’s having to pay attention to national crises like Brexit in case it affects whether you can get access to your life-saving medication or not.

It’s potentially having to make the decision between paying for your prescribed medication or food or books for school or other essentials.

It’s having to deal with the stigma attached to taking medications, especially if they are psychiatric or pain relief medications (particularly opioids).

It’s often frustrating and limiting, time-consuming and degrading.

But medication is often life changing and/or lifesaving. It can increase someone’s functioning to a point where they may be able to have some form of a social life, a hobby and/or work for an income, or at the very least feed and dress themselves. It can mean that you can become able to be left on your own without risk.

Alternatively, a medication can leave someone hospitalized from side effects or allergic reactions. It’s always a gamble, but you’re gambling with your health and sometimes taking that risk is required until it pays off and you find sweet relief from something that has been plaguing you for months or years.

And please, if you are an outsider looking at someone with chronic illness who is taking medication — take a minute to consider that maybe they need relief from that one symptom in order to be able to tolerate the others, and it might be a matter of life or death for them to have those tablets that seem so unnecessary or “overprescribed.” Don’t judge until you’ve tried living with multiple symptoms day in, day out for years.