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16 Things People With Chronic Pain Wanna Tell You

16 Things People With Chronic Pain Wanna Tell You

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.

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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.

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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

Sadly, we need to explain that both to the doctors and folks around. We don’t want drugs. We want anything to make the pain go away even for a little while. So yes, sometimes our treatment requires taking opioids or medical marijuana. We treat those just like any other remedy. And no, we are not particularly fond of the side effects either.

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.

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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.

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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!

Featured photo credit: carianoff via flickr.com

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Last Updated on September 18, 2020

13 Helping Points When Things Don’t Go Your Way

13 Helping Points When Things Don’t Go Your Way

For the original article by Celestine: 13 Helping Points When Things Don’t Go Your Way

“We all have problems. The way we solve them is what makes us different.” ~Unknown

“It’s not stress that kills us, it is our reaction to it.” – Hans Selye

Have you ever experienced moments when things just don’t go your way? For example, losing your keys, accidentally spilling your drink, waking up late, missing your buses/trains, forgetting to bring your things, and so on?

You’re not alone. All of us, myself included, experience times when things don’t go as we expect.

Here is my guide on how to deal with daily setbacks.

1. Take a step back and evaluate

When something bad happens, take a step back and evaluate the situation. Some questions to ask yourself:

  1. What is the problem?
  2. Are you the only person facing this problem in the world today?
  3. How does this problem look like at an individual level? A national level? On a global scale?
  4. What’s the worst possible thing that can happen to you as a result of this?
  5. How is it going to impact your life in the next 1 year? 5 years? 10 years?

Doing this exercise is not to undermine the problem or disclaiming responsibility, but to consider different perspectives, so you can adopt the best approach for it. Most problems we encounter daily may seem like huge issues when they crop up, but most, if not all, don’t have much impact in our life beyond that day.

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2. Vent if you have to, but don’t linger on the problem

If you feel very frustrated and need to let off some steam, go ahead and do that. Talk to a friend, complain, crib about it, or scream at the top of your lungs if it makes you happy.

At the same time, don’t get caught up with venting. While venting may temporarily relieve yourself, it’s not going to solve the problem ultimately. You don’t want to be an energy vampire.

Vent if there’s a need to, but do it for 15 to 20 minutes. Then move on.

3. Realize there are others out there facing this too

Even though the situation may be frustrating, you’re not alone. Remember there are almost 7 billion people in the world today, and chances are that other people have faced the same thing before too. Knowing it’s not just you helps you to get out of a self-victimizing mindset.

4. Process your thoughts/emotions

Process your thoughts/emotions with any of the four methods:

  1. Journal. Write your unhappiness in a private diary or in your blog. It doesn’t have to be formal at all – it can be a brain dump on rough paper or new word document. Delete after you are done.
  2. Audio taping. Record yourself as you talk out what’s on your mind. Tools include tape recorder, your PC (Audacity is a freeware for recording/editing audio) and your mobile (most mobiles today have audio recording functions). You can even use your voice mail for this. Just talking helps you to gain awareness of your emotions. After recording, play back and listen to what you said. You might find it quite revealing.
  3. Meditation. At its simplest form, meditation is just sitting/lying still and observing your reality as it is – including your thoughts and emotions. Some think that it involves some complex mambo-jumbo, but it doesn’t.
  4. Talking to someone. Talking about it with someone helps you work through the issue. It also gets you an alternate viewpoint and consider it from a different angle.

5. Acknowledge your thoughts

Don’t resist your thoughts, but acknowledge them. This includes both positive and negative thoughts.

By acknowledging, I mean recognizing these thoughts exist. So if say, you have a thought that says, “Wow, I’m so stupid!”, acknowledge that. If you have a thought that says, “I can’t believe this is happening to me again”, acknowledge that as well.

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Know that acknowledging the thoughts doesn’t mean you agree with them. It’s simply recognizing the existence of said thoughts so that you can stop resisting yourself and focus on the situation on hand.

6. Give yourself a break

If you’re very stressed out by the situation, and the problem is not time sensitive, then give yourself a break. Take a walk, listen to some music, watch a movie, or get some sleep. When you’re done, you should feel a lot more revitalized to deal with the situation.

7. Uncover what you’re really upset about

A lot of times, the anger we feel isn’t about the world. You may start off feeling angry at someone or something, but at the depth of it, it’s anger toward yourself.

Uncover the root of your anger. I have written a five part anger management series on how to permanently overcome anger.

After that, ask yourself: How can you improve the situation? Go to Step #9, where you define your actionable steps. Our anger comes from not having control on the situation. Sitting there and feeling infuriated is not going to change the situation. The more action we take, the more we will regain control over the situation, the better we will feel.

8. See this as an obstacle to be overcome

As Helen Keller once said,

“Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.”

Whatever you’re facing right now, see it as an obstacle to be overcome. In every worthy endeavor, there’ll always be countless obstacles that emerge along the way. These obstacles are what separate the people who make it, and those who don’t. If you’re able to push through and overcome them, you’ll emerge a stronger person than before. It’ll be harder for anything to get you down in the future.

9. Analyze the situation – Focus on actionable steps

In every setback, there are going to be things that can’t be reversed since they have already occurred. You want to focus on things that can still be changed (salvageable) vs. things that have already happened and can’t be changed. The only time the situation changes is when you take steps to improve it. Rather than cry over spilt milk, work through your situation:

  1. What’s the situation?
  2. What’s stressing you about this situation?
  3. What are the next steps that’ll help you resolve them?
  4. Take action on your next steps!

After you have identified your next steps, act on them. The key here is to focus on the actionable steps, not the inactionable steps. It’s about regaining control over the situation through direct action.

10. Identify how it occurred (so it won’t occur again next time)

A lot of times we react to our problems. The problem occurs, and we try to make the best out of what has happened within the context. While developing a healthy coping mechanism is important (which is what the other helping points are on), it’s also equally important, if not more, to understand how the problem arose. This way, you can work on preventing it from taking place next time, vs. dealing reactively with it.

Most of us probably think the problem is outside of our control, but reality is most of the times it’s fully preventable. It’s just a matter of how much responsibility you take over the problem.

For example, for someone who can’t get a cab for work in the morning, he/she may see the problem as a lack of cabs in the country, or bad luck. However, if you trace to the root of the problem, it’s probably more to do with (a) Having unrealistic expectations of the length of time to get a cab. He/she should budget more time for waiting for a cab next time. (b) Oversleeping, because he/she was too tired from working late the previous day. He/she should allocate enough time for rest next time. He/she should also pick up better time management skills, so as to finish work in lesser time.

11. Realize the situation can be a lot worse

No matter how bad the situation is, it can always be much worse. A plus point vs. negative point analysis will help you realize that.

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12. Do your best, but don’t kill yourself over it

No matter how bad your situation may seem, do your best, but don’t kill yourself over it. Life is too beautiful to worry so much over daily issues. Take a step back (#1), give yourself a break if you need to (#6), and do what you can within your means (#9). Everything else will unfold accordingly. Worrying too much about the outcome isn’t going to change things or make your life any better.

13. Pick out the learning points from the encounter

There’s something to learn from every encounter. What have you learned from this situation? What lessons have you taken away?

After you identify your learning points, think about how you’re going to apply them moving forward. With this, you’ve clearly gained something from this encounter. You’ve walked away a stronger, wiser, better person, with more life lessons to draw from in the future.

Get the manifesto version of this article: [Manifesto] What To Do When Things Don’t Go Your Way

Featured photo credit: Alice Donovan Rouse via unsplash.com

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