Tuesday, September 13, 2011

To Medicate or Not to Medicate?

There seems to be, in the Rheumatoid Arthritis/Fibromyalgia/ Autoimmune illness support boards that I am a member of, a wave of people who are ...hesitant to take different classes of medications for their illnesses. This is a rather touchy subject in general and the delivery of opinions has the ability to put people on the defensive about the choices they have made. Because of this, I have tried to stay as far away from it as possible. I will happily share my personal experiences but not give an opinion.

There are a couple of different schools of thought in this skirmish. First is the "all these medications are poison" group. These folks are the people who feel that we should not use drugs but should treat it naturally. I can completely understand the desire to manage the illness and achieving remission by changing your diet, adding supplements, or losing weight and exercising. If it were that simple we would all be in great shape and we would all be in remission. Sadly, we are not. I am in no way adverse to using " alternative" therapies such as acupuncture to control pain and eliminating foods if it keeps you from flaring. If it works for you, more power to you! The problem is that, as the commercial says; "Your RA is not my RA" and what works for you is not necessarily what will work for me. I would not presume to push my therapies on anyone & I have an expectation of the same respect. Unfortunately, not everyone feels the same way. There are some who are so militant about not taking medication of any sort that I liken it to PETA taking on KFC. They will never even bend to acknowledge that there might be another way. How helpful or supportive is it to see comments like "well, if you want to slowly poison yourself..." or "the ONLY way to treat this is the way I do it!"

The second part of this is the anti-pain medication group. It's hard enough to deal with the people- be it family, colleagues, ER docs etc who don't understand the pain we live with- without having people in our own community second guess the choices we make in regards to pain management. The largest segment of this group seems to be the folks who are just past the stage of diagnosis and grieving and are beginning to really look at their disease as a reality. They are also beginning to take part in their treatment beyond just doing everything that the doctors suggest {**Disclaimer**. I am not even remotely advocating that anyone go against their doctor's recommendations; I merely feel very strongly that we must ACTIVELY partner with our doctors in our treatment because no one can listen to our bodies the way we can.} and they are beginning to question the different methods of pain management. The questions, if not phrased carefully in the community can come across as both accusatory and judgmental. An example of what I am talking about goes something like this: "Joan" posts that she is just back from her doctor who has prescribed Tramadol (aka Ultram) but she's not sure how she feels about it and wants to know what others have experienced with this drug. Joan receives 30-35 responses. Of those, the first 10 or so are from people who have taken the drug letting her know the good and the bad that they experienced. From "it really helped" to "It didn't touch my pain" to "It worked but I had these side effects" to "I had an allergic reaction"; any genuine and sincere response would help Joan make her decision. BUT- in comes the monkey wrench in the form of the naysayers. You know the ones that I am talking about. The ones who say "I wouldn't take that- you don't want to become an ADDICT!" or the "I don't care what the doctor says, I only take my pills once a day because they just work with Big Pharma and want us to buy more pills.". Or "Taking pain pills will only mask the pain*". Following the initial one of those comments, the conversation tends to devolve very quickly. The devolution usually begins with something like "I take that and I am NOT an addict!" and goes downhill from from there into an argument that becomes both heated & personal. When that happens, those first responses that are the information that Joan was looking for are drowned out by the bickering & may even serve to scare Joan away from asking from help in that forum for a long time. Rather destroys the "supportive" atmosphere of the community, wouldn't you think?

I want to take a moment to address the " masking the pain" comment. I have seen & heard that more than once. When I heard it from a person who is healthy & is not living with any illness, I could roll my eyes & take it for what it is worth. When I see it written as an admonishment by someone who claims to live with a chronic illness, I have this to say: There is a reason they call it chronic pain. It is NOT GOING TO GO AWAY! If you pull a muscle, or break your leg, have a surgical procedure or a toothache & want to refuse pain meds, more power to you. In those cases I don't like to take much more than OTC meds myself. The pulled muscle will rebound, the broken bone & surgical site will heal & a dentist can fix the tooth. Taking heavy pain meds to mask that kind of pain can indeed allow you to fool yourself into thinking you are farther along in the healing process than you are which can lead to a setback if you overdo things. I get that. The difference is that those conditions are temporary! When we take pain medications for a chronic illness, we can hope it masks the pain enough for us to be able to get back to living a productive life. If you choose not to take pain medications, or choose to take them in a different manner than prescribed, I will have little to no sympathy when you complain about the things you are unable to do because of your illness. That may make me uncharitable but I can live with that since you made your choice and had no problem chastising those of us who feel differently than you do.

Essentially there are two messages to put out there. 1- Chronic illnesses like RA are very individual. Each of us has differing amounts of pain & damage, different onsets & respond to different therapies. Sharing your experience can be very helpful, insisting that your way is the only way and being dismissive of any other treatment options, not so much. 2- I have seen the judgement and infighting destroy relationships over the years, prime examples are discussions about religion and parenting styles. I am over that kind of message board so when I see it start bubbling up and take over multiple threads, I un-join & don't look back. I don't feel that that kind of negativity is beneficial to my health so I move on to find a more positive place.

We have enough battles to fight, against our illnesses, against our insurance companies, to educate those who don't understand and such. We just don't need the added stress. It's a difficult decision whether or not to try different medications in hopes of taking back control of our lives. We just have to remember that no matter what anyone says, the decision has to be our own because we are the only one who will live with the consequences.


deb aka murphthesurf said...

Very well said. This long term battle we face is a very personal one and one that we alone must walk. Respect for others and their decisions is so important but often so forgotten. And it also exists not just on these types of boards but also seems to be flowing fast in politics of late also. A great post.

Sharon said...

I agree wholeheartedly. Everyone has a different experience with this group of illnesses. It should be a personal decision and that decision should be respected by others.

Jules said...

I don't know about you two, but universally speaking, I find more acceptance about the health decisions I make (what meds are in my routine, whether or not to try a new exercise such as yoga, you name it) from my friends, colleagues and family than I do from people within our community. That kind of makes me sad.

Genny said...

One of the best posts I have read in awhile :)