I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn’t be further from the truth
It isn’t at all surprising to me that people have suggested to Lady Gaga that she is being dramatic, making her pain up or playing the victim.
Everyone with chronic pain has faced this exact same sort of stigma before. It is pervasive with fibromyalgia.
I want to say ‘Try it on for size, see how it fits. Hell, give it a decade or two and come back to me. Tell me how it feels.’ But I wouldn’t want anyone to endure this pain. Not ever. But it seems chronic pain is a member’s only club. The true depth of the experience is extremely hard to explain to people. And there will be those that doubt it is a valid experience. That you are in as much pain as you say. That you are in pain at all. That, surely, you exaggerate it.
You see, the main lesson we learn early on in coping is to try and function with pain and the fatigue of fibromyalgia. Generally, we learn this the hard way. We push through the pain. We do not pace. We do not pay attention to our limits. We want to keep our lives as IS. So we push through it. So perhaps the impact isn’t seen by the outside observer yet. This causes a great deal More pain. So we begin to seek some sort of resolution. But there isn’t any resolution. So we seek some sort of reduction. But there isn’t any easy answers there. But meanwhile we are still pushing through the pain. And this stress builds and builds until we cannot do that anymore. Generally, a lot of us learn the hard way we have to pace. We have to slow down. We have to pay attention to those newly imposed limitations.
I learned this twice. Because that is how I roll.
Nevertheless, the impact is seen in our lives then. People do not see the chiropractor, acupuncture, massage therapy appointments. Doctor appointments and specialist appointments. Diets. Supplements. Exercise. And every other thing we try and do. But when it begins to start to cancel plans and affect work… they begin to notice.
You are always cancelling plans
How is it you did that one day, but couldn’t the next. You are just lazy. You are just exaggerating the pain.
You just don’t want to work.
The judgements begin. All the while you feel guilty for not being who you Were. And struggle to maintain the semblance of a life you had. May be struggling to hold onto your career, working in general or dealing with the sudden loss of working. Not being able to work is something that is difficult to deal with financially, in regards to self-worth and guilt wise. All this takes adjustments. And people Judge.
What they have no comprehension of is the level of pain, fatigue, poor concentration and other symptoms of illness one has to endure and try to function with on a daily basis. When you are developing a treatment plan, it can be pretty much impossible to function. Unmanaged pain is extremely difficult to cope with. And it may never be managed well. That is the thing with chronic pain. Not everyone’s pain can be managed to a level they can function well enough to work or do the sort of things society expects of them. Some people can have moderately managed pain and they can function at a better capacity some of the time. And there are those with well managed pain. But it is still pain. It is still very difficult to deal with. There are still very bad days, moderate days and then there are good days. It is very unpredictable.
Oddly enough they think we exaggerate when we also learn to mask the pain in order to function in society as we do. We are rather stoic given the level of pain we are in. We have exceptional pain tolerances we develop from dealing with it all the time. We have ‘baseline’ pain that we fine ‘normal’ or ‘good days’ and I will guarantee the average person wouldn’t find that ‘normal’ at all. And we have moderate pain that even Then we are still going at it… but not doing Quite as well. And we have brutal pain that would have the average person in the ER, and certainly it is the sort that causes us to be non-functional. So do not judge us for non-functional days. Not to mention there are decades of worse pain sometimes. Times when pain management isn’t working. And it is relentless then. But we get through it.
I think it is a great thing that Lady Gaga is out there sharing the truth about chronic pain and fibromyalgia. But with that truth comes the very true fact of the stigma we all experience. It is a great thing she is pointing it out as well. When your pain isn’t managed it will manage you, and you need to take the time to deal with it. She has no one to answer to for that. Most people will completely understand that. Those that don’t are the ones that we all deal with in our lives and why awareness is so very important in the first place.
But I will say this:
Just because you cannot see my pain doesn’t mean I have to validate its existence to you. Believe it. Or don’t. I don’t care. I still have to live and cope with it whether you do or don’t. What it does mean is that if you don’t… you will not be a person I will value in my life. If you do not believe in a fundamental experience that defines my existence and how I live in this world, then I have very little use for you.
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