4 Lies We Believe About Life With Illness article #invibleillness

4 Lies We Believe About Life With Illness 

Yes, I agree.


1. Your illness is a sign that you somehow messed up - Sometimes we believe this because others reinforce this belief. There is this stigma that somehow we are at fault for becoming ill or that somehow we could do something to improve our situation dramatically if only we followed their advice... and that they can avoid it somehow, even though the fact is invisible illness are far more common than people think and the time in our lives when we are perfectly healthy, if they exist, is a short time indeed given the average life span. It isn't karma. It is just reality. Yet we are always consumed with guilt about it rather than forward thinking. Guilt is such a plague for us. Even when we are rid of it it comes rebounds back at some point or another.

2. If you rest you are letting the illness win - "
In the United States, the afternoon nap gets little respect. Many countries have rest times built into their work days, from Latin siestas to afternoon naps in Japan's workforce, with "nap salon" popping up in major cities. But in our culture the shift in attitude has been slow, despite the fact that Google offers employees "napping pods" to take a quick rest. Rest has traditionally been considered a sign that you are lazy and unmotivated.
Those who are chronically ill are not exempt from this attitude and we constantly fight the desire to be horizontal, even if just for a few minutes during the day. Despite our illness we still worship busyness and full calendars, even if it includes doctor appointments and physical therapy. We want to feel like we have accomplished something.
In truth, pacing one's self, learning when to take a nap, or just scheduling some "down time" is essential in coping successfully with an illness. Disabling fatigue is a common symptom of most diseases, and if ignored your body will respond with more fatigue, possible infection and exasperation of the disease.
Research has found that afternoon naps have a positive impact for those who do not even have an illness. Effects include lowering the risk of heart disease and restoring the sensitivity of sight, hearing, taste and improving memory.
I have no idea why this one is such a battle. It is like the saying 'no rest for the wicked'. Like we cannot permit ourselves a moments peace or rest... even though our bodies need it. Fatigue can be quite extreme. Yet, we don't want to feel 'unproductive' or 'useless'. We don't want to be plagued by that damned guilt by not doing things and pushing ourselves. Even though we are told to rest. Even though part of our therapy is medication and relaxation and deep breathing and we are told to take time each day to do these things... it seems wrong somehow to waste time doing it. Yet, it is something that is taking time to actually benefit our health and that is somehow wrong?

3. You should always push through the pain- For me this is by far the worst for chronic pain. With Fibromyalgia I find I could always to some extend ignore what my body was telling me... because it is my brain and not my body, but only to some extent... push too far and I would regret it for far too many days. I learned where that limit was, but sometimes forgot or sometimes pushed beyond it anyway. But for everyday life I understood my limits. For exercise I understood my limits and going beyond them can cause injury. But it was far worse for chronic migraines because when you have no way to manage the pain and continue to try and function... just pushing through the pain and pushing through the pain and pushing through the pain... eventually you don't want to survive like that anymore when you realize no one particularly cares that you are enduring that much pain. Pain like that is dangerous and this mentality that we must push through it without proper pain management is far more dangerous... but far too common.


4. You can have your life back after you go into remission - "Chronic illness has a way of happening parallel to life's events -- getting married and having a family, going to college and thriving in a career, taking a trip or meeting a personal goal. Although these events may not occur exactly as you had imagined or they may happen on a different timetable, they can still happen. Don't believe the lie that you need to wait until you feel better."
Well, I believe in better not in remission for my illnesses... but better was long ago.
- This is the danger of pushing through the pain... I had believed I just needed to push through the pain... until I saw the neuro... until a medication kicked in... until... until... until. Until never happened and I didn't have a life and I barely survived, until, again I didn't want to survive. So really I think I should not have put up with that, but again the lack of pain management is hardly in my control. I think what terrifies me the most is barely sufficient treatment. Such that I'm considered 'just functional enough' to work again because it never lasts and no one cares when it stops working and no one cares that barely functional is a horrific place to be. I wish they could comprehend that daily chronic migraines with no effective preventative is as bad as it gets, plus another chronic pain condition doesn't help... to expect someone to function at a full time job like that is insanity. To help with pain management and make things slightly better would be awesome and improve my quality of life but to expect dramatic improvements such that I can work full time... if that can be achieved would likely be ruined by the actual working full time again. Because they cannot grasp that means I will likely never achieve a decent quality of life and pain control because I will likely at some point return to work. My only aim is that I can emotionally and mentally survive that... such that I want to want to survive the increase in pain that will result from that. There is no 'getting your life back'. I never had much of a life working, I cut out everything but working and just surviving working. I like not working because I don't feel so... raw and desperate. So frantic. So potentially suicidal. I have times of the day before a migraine begins that are mine. Those times that I never had free to use. And I feel calmer. And I did like the work itself, my co-workers, the financial stability, the feeling of self-worth... just not the pain. So I will lose all that... I won't get my life back... I will lose those pain free gaps in the day. I will lose the ability to sleep in, such that once again I will be sleep deprived all the time. Which is why every time I talk to the insurance company lady I feel anxiety and then I get depressed for days. I'm afraid of returning to work. Afraid of the pain. Afraid of the my ability to cope with it. Afraid of my emotional stability. Afraid I won't be able to endure the pain for long. Afraid once again, a year, five years, a decade down the road I will choose to not survive it.
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