It’s not just in our head. The pain is there and always would be even if there is no apparent reason for it. Our pain is real and will not just go away after we take some pills for a week or two. It would always be there and we have learned to live with it. Here are 16 more things we wish you knew about us!
1. WE DON’T MAKE A MOUNTAIN OUT A OF MOLEHILL
You think you can imagine our pain? Now multiply that amount by 10. No matter how sympathetic you are, studies have proved that people tend to underestimate other people’s pain. Chronic pain by default is hard to imagine unless you have experienced it in your life. It’s invisible, but it is always there. We urge health care not out of hypochondria or the need for attention, but because of our severe physical state.
2. WE NEED TO BALANCE ACTIONS CAREFULLY
We use the Spoon Theory: We have a limited amount of spoons each day we could use for different actions. Getting up, getting dressed, taking a shower, driving, walking, picking up the phone — each action requires us to use one of our precious spoons. On good days, we finish with a few spoons left, so we can do something fun. On bad days, we borrow spoons from the next day and need extra recovery afterwards. So if we suddenly cancel our plans with you or tell we can’t do it now — it’s just because we ran out of spoons today. Try to understand this.
3. WE STRUGGLE TO FIND A GOOD DOCTOR
Sadly, a lot of health care pros lack knowledge in pain management because it is rarely part of their training. We often visit numerous specialists before receiving a proper diagnosis and wait months to years to see a real pain specialist for treatment. Doctors often fall victim to the cognitive error of underestimating another’s pain and a small number of doctors are willing to take the legal risks involved in prescribing powerful pain pills.
Same goes with the nurses. Finding a good one who can really understand and help us relieve the pain is hard! Luckily, there are some online schools like Sacred Heart University that are training future nurse leaders to overcome these issues in the future and provide better care for patients.
While you may think it’s crazy, we’re willing to travel further to find a good nurse with this kind of training and rave about it when we find one.
4. WE ARE NOT LAZY
Remember the limited amount of spoons we have? Now add the fact that it takes twice as much effort for us to complete even simple things. We try harder than other folks, yet we still manage to accomplish less.
5. WE TRY TO LOOK OUR BEST
“But you don’t look sick” is one of the most common phrases you hear if you have invisible disease. Well yes, we try to look our best even on bad days when our body explodes from pain. We dress up carefully to cover up our bruises or swelling, take painkillers at the optimal time, and rest before going out. We would love to pass as normal as much as possible! Even if we feel pain, we would keep it to ourselves until the moment we step into our apartment and just collapse.
6. WE DON’T IGNORE YOU
Sometimes our pain occupies too much space in our brains and we simply cannot focus on anything else. Pain can be very distracting and mentally draining, so please forgive us when we can’t give all the attention to you.
7. WE KNOW OUR ILLNESS WON’T GO AWAY
It’s always there. We can’t escape. And yes, we have researched all the possible options. If there was a cure, we would know about it!
8. WE ARE NOT DRUG SEEKERS
In fact, as the Cleveland Clinic explains: Addiction appears to be distinctly uncommon in patients without a prior history of addiction. Addiction is a psychological phenomenon that isn’t caused by chemical components of the drugs and typically requires a setting different from the one we have. We take our drugs under supervision and come back home to the loving family unlike the street-users.
9. WE DON’T ALWAYS KNOW HOW TO MANAGE OUR PAIN
Just because we have been dealing with it for ages doesn’t mean we always know how to tame it. Sometimes, we have very bad days when no previous routines help. We just close our eyes and wish those would pass faster.
10. WE GET SUPER ACTIVE ON GOOD DAYS
Physically feeling good is just about the most exciting feeling we can have! We can do our chores normally, go on a day trip, meet with a bunch of people at a time, and even think of running a marathon. On a good day we are super active and excited with everything, trying to get as much done as possible!
11. WE DON’T WANT YOU TO STOP INVITING US OUT
No matter how many times we have said “no” we still want to be part of the gang and go out when we really can do it.
12. WE DON’T HAVE A JOB FOR A REASON
Again, we are not lazy. It’s just that we often lack spoons to work on the top of our other activities and daily chores. Besides, most employees refuse to take staff for a few hours per week and tolerate the fact that we can leave at the middle of the day if our pain gets unbearable.
On the bright side though, thanks to technology we can work from home in our own pace, doing various jobs online, selling stuff on eBay or Etsy, learn everything we need from self-help and nursing to design or coding online. If we don’t have a regular job, it doesn’t mean we can accomplish nothing in life. Multiple sclerosis did not stop Vanessa Heywood from creating an award-winning music company!
13. WE DON’T WANT SYMPATHY, WE WANT ACCEPTANCE
Instead of making that “I’m so sorry for you” sad face, treat us like equals. It’s not that you should completely ignore our condition, but show us you are ok with it and ready to make small adjustments for us.
14. WE DON’T WANT YOUR MEDICAL ADVICE
Believe me, we have heard enough already and feel frustrated, as they don’t work. Thanks for the thought, but let’s just talk of something else. My disease does not define me. I know a lot of other interesting things, I would love to discuss with you instead.
15. WE NEED TO KNOW YOU ARE HERE FOR US
No matter how self-sufficient and independent we try to appear, sometimes we just need you to be here with us and hold our hand on a bad day.
16. WE APPRECIATE YOU AND EVERYTHING YOU DO FOR US
You should never forget that. We are eternally grateful for supporting us and making us feel loved!