Medication is necessary for some disabled people to have less pain and stay out of the hospital but unfortunately, not everyone sees the good in our medication. Some people have a really hard time understanding why we take certain medicines because all they see is us popping pills and they will suggest we stop taking it to cure ourselves. Medication does not cause disabilities because the exact cause for many chronic conditions is unknown and we will not be magically cured if we stopped taking our epilepsy medication. Some people with Spina Bifida will have more challenges than I do and may require more medication but that is not the case for everyone and some people may not need any medication at all. I have a lot of challenges and luckily I have not needed a ton of medication because most of the things I live with can’t be treated with pills but I do have a few I need to take regularly. Medication is necessary for certain conditions because it can save lives but unfortunately, most people don’t see it that way and view it as a bad thing. In this post, I am going to talk about how my health would be negatively impacted if I suddenly decided I wanted to take the natural route and stopped taking my medication
I would be in the hospital a lot- My vesicostomy which is the stoma I have on my lower abdomen that gives me the ability to pee independently was created by using a section of my large intestine but the downside of that is my bladder creates a lot of mucus because it hasn’t figured it has a new purpose. In 2008 I started having a problem with bladder stones because the mucus in my bladder rolls around which will eventually turn into stones. For some time I was having surgery every six weeks because stones can develop quickly and without me knowing because I didn’t feel pain. Bladder stone surgeries sometimes were quick because they could be removed laparoscopically but if they got too big it was a full-blown surgery that required an incision. Surgery gets old after a while because even if it is a minor procedure anesthesia is still hard on your body. Bladder stones can be an issue for some people with Spina Bifida that have a vesicostomy but in my experience, it’s more problematic for active people than it is for full-time wheelchair users. There is no cure for bladder stones and the only way I have been to prevent surgery is because my doctor found what I call a miracle medication that I put directly in my bladder a few times a day that basically dissoves stones small enough so I can pass them and I haven’t needed surgery since. If were to even suggest the idea of not using my medication to my doctor they would think I have completely lost it because it’s the only thing keeping me out of the hospital and is a crazy thought!
I would have seizures-When I had my first seizure I was not expecting it because I was on vacation and I was not prepared for it. I tumbled and if it wasn’t for someone catching me I probably would have hit my head on something and seriously hurt myself maybe needing stitches. It was difficult to get my medication right because I don’t have your typical textbook seizure and pretty much none of my seizures register In my early seizure days I have fallen down a flight of stairs and face-planted on tile floor because you only have a few seconds warning which is not enough time to get to a safe place. I have not needed as much seizure medication lately because I have gotten my anxiety under control which is what triggers my seizures but my doctor is still not comfortable taking me off of it just yet. There is no cure for epilepsy and the solution to managing seizures is through diet or medication because if you miss a dose of your medication it significantly increases your chances of having a problem. Some people outgrow epilepsy and are eventually able to be taken off of their medication but most people don’t and medication is necessary to keep them out of a life-threatening situation.
I wouldn’t have a life– When I first started experiencing migraine pain it was out of the blue and one day I just started experiencing pain that never stopped. At first, I thought it was strange because I never got headaches except for an occasional headache so I thought it had to be a shunt malfunction. I went to my neurosurgeon to get my shunt checked because if it was a shunt malfunction it needs to be dealt with as soon as possible because unresolved shunt issues can be fatal. I learned that a piece of my shunt tubing broke off and was hopeful that after having it fixed my pain would go away but my pain still didn’t go away. In the early days of my migraine and headache pain, I didn’t have much of life because it took some time to get the medication right and I wasn’t all that familiar with managing daily chronic pain. The wonderful preventative that my doctor put me on is what gave me life because without it I can’t exercise or do much of anything outside of my bed! My medication makes me very tired some days and all I want to do is sleep and I can live with that but I can’t live with constant daily pain that disrupts my life!
Disabled people don’t expect abled people to understand everything about their disabilities but you shouldn’t tell them to stop taking their medication because of a disability you don’t understand because it’s harmful. Medication is necessary for some disabled people to manage their health and is prescribed by their doctor for a reason because if we didn’t need our doctors wouldn’t recommend it. You may not understand the reason someone is popping pills and that is okay but you should not tell someone to stop their meds if you are not their doctor because it’s not your place to be making those kinds of decisions. Medication is not the reason many disabled people struggle with their health but is the solution for getting better and staying out of the hospital. Stop medication shaming because no one likes the nasty side effects but sometimes it’s your only choice and you just have to learn to deal with it because it’s better than the alternative. Some people are easily convinced that their medication is harming them and will stop taking it if a social media follower says they should before even considering talking to their doctor. Medication is not a side of weakness but is a sign of strength because when you are willing to take a few pills that you are not crazy about it shows that you will do whatever it takes to improve your quality of life. Have you ever been told that stopping your medication will cure you?
I can imagine the weird advice people might give about medications! As a healthcare worker I’ve been repeatedly surprised when I have to teach people why they can’t just stop a med once they feel better