10 Things Everyone Should Know About People With Chronic Pain
This is an open letter to anyone who knows someone with a chronic pain illness. From the perspective of someone with a Chronic Pain illness, these are ten things we want you to know about those of us, who suffer from anyone of a number of chronic pain diseases.
1. Why We Cancel Social Engagements:
People with Fibromyalgia and other chronic pain illnesses, often suffer anguish from having to cancel plans so frequently. We don’t want to, but we do, that is if we are brave enough to make plans in the first place. Think for a minute, what it might be like to have a chronic pain illness. To a large degree you become a shut in. When you move around with chronic pain, it sucks the energy out of you. Also, the more you move the more it hurts. When you’re a shut in you are willing to do whatever it takes to get out and be social. But sometimes you just can’t. We’re sorry, more than you know. All we ask is for patience and understanding.
2. Chronic Pain Is More Than Just An illness:
Saying that fibromyalgia or any other chronic pain condition is an illness implies that there is a cure or that we should feel better after a couple of weeks of medicine and therapy. The important thing to remember is the key word chronic. The word “Chronic” means “persisting for a long time or constantly recurring.” Chronic pain is not like having the dreaded achy flu with a fever for a week that suddenly disappears one morning when you wake up and you feel just fine. We wish it worked that way. We pray to wake up some morning to find our chronic pain gone and have a lot of energy. But the word chronic means that it will persist for a very long time, likely forever, especially it your chronic pain has a more detailed diagnosis like fibromyalgia, chronic fatigue or neuropathy.
3. How Are We Doing?
If you are kind enough to ask “how are you doing?” or “how are you feeling?” and we act kind of funny about answering you, it’s because it’s complicated, or because we wonder, do you really want to know? Or because we get tired of saying we feel lousy. Don’t be easily deceived. We may say “we are fine.” We may be lying or we may be truthful. It’s hard to say because is depends on the time of day when you ask that question. Our condition can vary from one hour to the next.
4. How Can You Help Us?
If you’re interested in helping us, it can literally be as simple as sincerely validating us. Be genuinely sincere when you say you understand. We can spot phonies a mile a way. We would like to have your honest acceptance of who we are with a chronic pain condition and be patient with us.
5. Important Things to Understand About Us
Things can change hour by hour with for those of us who suffer from chronic pain. So please bare with us.
We are victims, we didn’t ask for a chronic pain disease, who in their right mind would?
We are as independent as we can possibly be. It may not look like it considering how much help we sometimes need. If you should happen to see a smile on our face, please consider how much energy and effort it is taking. We would give anything to not be sick with chronic pain. Anyone who enjoys pain is insane. It may not look like it, but we try to live the best, the most normal life we can. It may not look like it but we are. We need a lot of sleep because not only does pain hurt, it wears us out and makes us tired.
6. Chronic Pain Illnesses’ Are Real
Most chronic illnesses now have an identifiable name like Fibromyalgia, Chronic Fatigue, Neuropathy, Trigeminal Neuralgia, IBD, IBS, TMJ, and Gout to name a few. Just because we don’t look sick doesn’t mean we’re not sick. We can feel crippling pain and hopelessness and look fine on the outside.
7. Don’t Judge Us
You may see us clean out our car or do a load of laundry and think we are faking a chronic pain illness. The truth of it is that the majority of our time and for some, all of their time is spent in pain. But most of us have a few good days and because we are not lazy we try and do as much as can of our few good days. We have to pace ourselves on good days so that we don’t have to pay extra on bad days. Some times we choose to over due it on good days because we just want a quick taste of being normal. We know we will pay a price for it the next day but sometimes we think it is worth it. Another point to make is just because you haven’t heard of all the pain related illnesses doesn’t mean they don’t exists.
8. Sometimes It’s Hard to Explain How We Feel
There are so many painful sensations and accompanying emotions and brain fog it’s often hard to put how we feel exactly into words. But trust us when we say, we feel terrible physically and emotionally.
There is a plethora of medication and pain relievers out there as options to manage our pain. But even with all the proper medication we still feel pain. Pain meds don’t take away all the pain. Sometimes the best we can hope for is a degree of relief, but seldom, if ever, does medication take away all the pain.
10. We Are Not Hypochondriacs
We are not making this chronic pain stuff up. There are some people that really are hypochondriacs but if you think we are, take a look in our medicine cabinet or observe us for a few days and see just how fake are illness isn’t.
We don’t want pity, and we don’t want to be looked down upon. We want respect, validation and trust. We really are sick even though we don’t look sick. Ask yourself, who in their right mind would want to be sick with chronic pain for their whole life. We don’t.