What to Know in the Early Stages of Living With Chronic Pain

The word “chronic” is rarely used to describe something positive. Have you ever heard of chronic joy or chronic beauty? No. But the world is rife with chronic depression, fatigue and pain. Chronic pain can be traumatizing, especially if you were young, active and independent prior to the pain. My own pain disrupted my life. I always wished there was a manual for living with chronic pain, so I made a brief orientation guide for those going through the first, most difficult stages. The journey to acceptance may be long, but it helps to know how others survived.

1. The pain is here to stay.

I know you thought this would be temporary and that your life would eventually go back to normal. I know people keep telling you the pain will go away. You are struggling to maintain your ‘previous’ way of life, but it’s not working. That the pain had come and disappeared in the past so it might disappear again.

I’m sorry to tell you that the pain is likely here to stay. By this point in time, I think you’ve realized that the pain will be part of your life for a very long time, and that’s OK because only when you’ve accepted this can you make adjustments and move on. You need to treat the pain like a newborn child. Life will never be the same, and it’s unfair to expect it to be. Your sleeping schedule will change, maybe even your working hours. You may have to take time off work to take care of your pain, or quit your job. You will be making a lot of visits to (many) doctors. You will need to carry around things you now need to function in a world built for the able-bodied. Orthopedic sitting pillows, walking aids, medications, heat packs. Your pain needs a lot of attention. Let go of the desperate hope you will miraculously wake up, one day, pain-free. That is always a pleasant possibility, but let’s not plan your life based on this.

2. Listen to your body.

When your body says no, listen to it. If you’re having a bad flare-up, it’s OK to spend the whole day resting. You need to pace, pace, pace. Whatever you do, do not push through the pain because it only makes things worse. Rest, nap, take a hot shower and bundle up. Find out what makes you feel better and do it. No one is going to die if you disappear from the world for a little while until you feel (partly) functional again. Be selective about where you invest your limited energy. If you’re going to flare, make sure it’s worth it. Some things are worth flaring for.

3. Be honest about your pain.

When someone asks how you’re doing, it’s OK to tell them the truth. Yes, I’m still in pain. No, it’s not better. Yes, I’ve tried that. No, it didn’t work. No, I don’t want to try that. I know you know someone who tried it and now they’re better. But no, I don’t want to. Thank you for asking about me, let’s talk about something else. How have you been? (This is usually the best deflector when you’re sick of talking about your pain). You don’t have to lie about your pain. People feel bad and want to hear you’re doing better, but you don’t have to pretend you’re better to make them feel good. You’re still in pain; you have every right to say so. If you lie, you may end an annoying conversation, but people will expect things from you that you’re still unable to do and get upset if you don’t do what they ask because they think you’re being “lazy.” So, just be honest. If someone asks, “How is your pain now?” and you’re tired of repeating the same answer, you can simply say “I’m coping better.”

4. Find support.

Most people you know from your pre-pain life will not know what it’s like to live with your constantly gnawing pain. They will give you all sorts of well-intentioned advice that makes absolutely no sense.

“Just distract yourself.”

“Have you tried exercising?”

“You need to forget about your pain.”

Don’t get angry; they’re not to blame. They don’t and won’t understand, which is why it’s important to find someone who does. Find a therapist who has treated patients with chronic pain. Connect with friends, old and new, who live with painful conditions. Join online support groups. Type your heart out. There is a whole world of people out there who are feeling pain similar to yours and are facing the same challenges. It may not be wise to ask for medical advice online, but pain-friends can provide valuable advice about coping and alternative treatments. I’ve also found them to be more understanding and socially supportive than many doctors I’ve visited.

5. Ignore the shamers

If your doctor prescribes a medication and it makes your pain (if only a little) better, take it. Do not feel guilty for taking your medication. You can always discuss natural alternatives or add-ons with your doctor, but do not deprive yourself of a drug’s therapeutic benefit because of shame. It is not your fault you are in pain. You did nothing to deserve this pain. You have every right to try options made available by modern medicine and continue taking them for as long as they are prescribed. Ignore the pill-shamers. They’re not the ones tossing around all night trying to get some sleep before the morning alarm sets off. They’re too busy judging, doing yoga or filling their pain-free bodies with kombucha.

6. Accept the love.

This is hard to do, but there will be things you can’t do anymore and you’ll need help. There will also be things you can still do, but because they make your pain worse, it’s often better to allow others to do them. Some things can be done by hired help; other times, family members and friends will help out. It’s OK to accept help and appreciate the love. It’s also OK to feel guilty while accepting help or love because many of us with chronic pain are used to giving, not receiving. You will need time to decondition yourself.

7. Nostalgia is nice, but don’t dwell

During the first year of my pain, I would always recall the same point in time of the previous year, when I was well:

“This time last year, I could do this activity without pain.”

“This time last year, I was carefree, happy, pain-free.”

But, of course, that’s not entirely true. Because this time last year, I had other worries clouding my mind. I had emotional pains. Health nostalgia blinds us to this and it’s easy to fall into the trap of idolizing your pre-pain life. Instead of brooding in your current condition and mourning the past, you could reflect on your past healthy years with appreciation:

“This time last year I traveled to that city; I’m so glad I got to do that before the pain started.”

“I sat through a 13-hour flight, something I don’t think I’ll ever be able to do again.”

“This time last year, I volunteered for a good cause. I helped people when I was able to.”

Maybe with time, the comparisons will be positive, even if the pain doesn’t change:

“This time last year, I didn’t know what was wrong with me, and now I have a clear diagnosis.”

“This time last year, I was put on a drug with horrible side effects, but I had to try it to know it doesn’t work.”

“This time last year, I was super swamped with things to do, and now I have a lot more free time to think about where my life is going.”

“This time last year, I felt my worth was based on my productivity; now I enjoy folding laundry. I realize I’m enough.”

8. Find new hobbies.

Abilities change with pain, and so should hobbies. If you can no longer play tennis, find a virtual substitute. If you loved drawing, download a sketch app. If you enjoyed writing, find a speech-to-text program to assist you. If you have a sitting disability, find a fun activity you can do standing up. If you can’t stand, invest in a super comfortable chair or sofa. Watch old movies. Bake, do puzzles, play with children. Get a Kindle so you don’t have to break your neck to read that captivating book. But also, don’t be pressured to pretend you are enjoying yourself when a pain flare strikes. It’s also OK to curl up on your bed and do nothing while waiting for the pain to pass.

9. Keep trying.

Never give up trying to diffuse the pain. If you’re up for it, try new treatments every now and then. Acupuncture. Tai Chi. Dry needling (ouch). Cupping (yes!). Massage. CBT. Mindfulness. Art therapy. Music therapy. Retail therapy. Stretching. Stargazing. Turmeric-infused goat’s milk. And when most of these won’t work, don’t lose hope. Take a break, then try again. It’s enough that you’re still trying. Believe that, one day, you’ll find something that works. Even if you never do. Accept the pain, but don’t surrender to it. Seduce it. Appreciate your pain for the lessons it can teach you. Hate it for stealing your life. Embrace its unpredictability. The most important rule is that, with pain, there are no rules. Accept your vulnerability. Your body may be broken, but it is never beyond healing itself. Trust in its ability to guide you toward the life that is best for you. Trust that you don’t always have to be in control, that energies shift regardless of your prayers. That hope is a wavering act of looking up, waiting for the stars to align.