One of the sad truths about dealing with a chronic pain condition is that those we love the most quite often don't understand anything about our condition. And, no matter how hard we try to educate them about the things we are living with, they refuse to accept what we are saying as the truth. They tell us that we are making our condition worse by not exercising every single day, when some days, just walking to the bathroom is all the exercise we are able to handle. They tell us that anyone taking that many pills a day has to have a drug problem, and that we should probably go to rehab. We try to explain that our doctor knows everything we are taking, and would never prescribe meds just for the fun of it. But these explanations seem to fall on deaf ears.
This is one of the most painful parts in dealing with chronic pain. When we were first diagnosed, these loved ones were often at our sides, offering love and support. But like most people, there is an assumption that a doctor is going to cure you. You may be sick for a while, however, it is assumed that you will eventually get well. Unfortunately, most of us with a chronic pain condition will never get better. We learn to live with the condition as best we can, be we have to accept the fact that it is always going to be with us. It is a long, hard fought battle with ourselves, but eventually, we have to come to terms with it, or go crazy fighting it.
For those who love us, that acceptance is harder to come by. They aren't the ones experiencing the pain and they don't have any conception of how severe it is. Quite often, my sons will give me a high five for something they've done. They know not to hit my hand very hard, but sometimes they forget. The pain will shoot from my hand, straight into my shoulder and it stays there for hours. When I say "Ouch!" or rub my arm, they look at me like I have lost my mind. They can't imagine that something like that could possibly hurt because they have no frame of reference for that kind of pain. I think it is the same for many of our family member's. They have no concept of unending pain, and it's hard to accept that we are actually feeling the things we do. And quite often, nothing we do or say can change their minds.
Quite often, our family members are just as frustrated about our conditions as we are, but in different ways. We have all experienced wanting to help someone we love when they are sick, or in some type of pain - be it physical of emotional. Our family member's watch us suffer day after day, and they want to do something to help us, but nothing they do works. Because they can't help, they often feel frustrated, helpless, and yes, angry. They aren't really angry with us, but quite often, they turn those feelings on us. They are really angry about the situation, and the fact that there is nothing they can do about it. I can tell that my husband feels that way sometimes, and I try to make him feel better by reminding him that my illness is not a reflection on him. I tell him that by just being there, and listening to me without judging, is more help than he can ever know.
And then, there is the medication issue. Many of us who suffer from chronic illnesses, including chronic pain, quite often take handfuls of medication two or three times a day. This certainly isn't the norm. Most people only take medication when they're sick or they have a headache. If we were diabetics and took insulin shots several times a day, it would be far easier for our family member's to understand our need for that particular medication. I have high blood pressure, and no one bats an eye at my taking that medication every day. But, as sufferers of chronic pain, many of us are taking narcotics several times a day.
There is a lot in the news lately about drug addicts running from doctor to doctor to get their narcotic fix. There are shows about forcing drug addicts into rehab. Our loved ones hear the news reports and watch the intervention shows, and then they see us swallowing our multitude of pills every day. I can understand why they are worried about us. We try to explain to them that we need these pills simply to be able to function. We try to explain that we are not "doctor shopping", and that everything we take is prescribed by the same doctor every single time. We try to explain that our doctor's wouldn't give us these medications if we didn't truly need them. But so often, our words go in one ear and out the other. This can turn into a vicious circle which hurts all parties involved.
If possible, include your loved one in your treatment. Take them to your doctor appointments so that they can ask questions about what it going on with you. Many times, family members can hear the doctor say the exact same things we have told them, but they accept it more easily when it comes from a medical professional. Unfortunately, this doesn't always work. There are times when a certain family member will start in on me about my drugs and lack of activity, and I simply tell them thank you for the concern and try to change the subject. I refuse to discuss my medical care or condition with them. I do tell them, however, that whether or not they understand what's going on with me, I still need their love and support.
With some loved ones, none of this works. These people constantly berate us about why we aren't getting better, and why we have to take so much medication. We try explaining things to them. We try ignoring them. And we finally realize that none of this is working. It is at this time that we have to decide if a relationship with this person is worth all the pain they are causing us. If the answer is yes, we have to figure out a way to ignore the things they are saying in order to continue having a relationship with them. But, if the answer is no, it may be necessary to distance yourself from this person. We have to take care of ourselves emotionally, as well as physically. If the pain becomes too much to bear, you must back away from the source of that pain.
I know how hard this can be. I have had to end relationships with a couple of friends because they were constantly telling me that I obviously had a drug problem, because no one could take the amount of medication I took, and not become addicted. I did everything I could think of to try and explain my condition, and the treatment my doctor was giving me. But nothing worked. In the end, I had to decide if staying in the relationship was worth the pain that it was causing me, and the answer was no. It was hard at first, but in the end, it was the right thing to do. If you are dealing with a relationship which has become toxic, you have to look into your heart and decide if you need that in your life right now. And know that whatever decision you come to, it is the right decision for you.
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