About the Author: Gillian is a 21-year-old student at Baylor University — currently taking time off to manage her health. After years of chronic pain and medical anomalies, she was diagnosed with EDS, POTS, and MCAS, followed by gastroparesis and MALS. She feels very passionately about spreading awareness about these less commonly recognized conditions, helping patients get the care they need, and advocating for the chronic illness community as a whole.
10 Things I Learned From Living With Chronic Pain:
1. Pain does not discriminate.
Pain can impact anyone of any age, race, social class, etc., and there is no way to know the level of pain that another person is experiencing. Young people are often judged for being “too young to be sick,” and I have experienced this firsthand. It’s not only uncomfortable and inappropriate to say, but can also make people feel bad about themselves. My own experiences being judged have helped me remember to never judge anyone else and the pain they are experiencing.
2. Real friends stick around through the bad stuff, not just the good.
Unfortunately, not everyone is the type of friend who will stick around through the tough times. However, some people step up and show up to be the sort of friend you want to have around on your worst days. Some friends visit you in the hospital, bring meals when you don’t feel well, send care packages from a distance, or offer to help in whatever way they can. These are the friends who last a lifetime.
3. Doctors work for you… if you aren’t getting anywhere with one, try another.
Oftentimes people with chronic pain experience at least one doctor telling them that their pain must be all in their head, or caused by anxiety. These are the doctors that shouldn’t get your money anymore. Signs of meeting a good doctor are feeling heard, respected, taken seriously, and having your questions answered. If your doctor is not doing these things, you should feel empowered to find a different doctor to help you on your journey.
4. There is joy in every single day, so be sure to find it.
One of the hardest parts of dealing with chronic pain is in the first word — it’s chronic, often meaning every day. When someone hasn’t experienced pain that never ceases, it’s hard to even imagine. For those of us who do understand, you find ways to make it through because you have to. I have learned that there is at least one small joy in every single day, even if it is as small as snuggling my dog when I am unable to get out of bed. The joy is always there, and I always make myself find it and acknowledge it.
5. It is important to talk about your pain because others don’t understand.
As I said, most people who haven’t experienced chronic pain have no concept of what it’s like to be constantly hurting. Because they don’t understand (and because it’s not intentional that they don’t understand), it’s important to talk about what it’s like to experience what you live with daily. It is helpful for loved ones to know when you are in pain, hear you explain what it is like to the best of your ability, and talk about when you are struggling so they can do their best to at least understand you.
6. Giving yourself grace is one of the most important skills to learn in life.
When every day is difficult because your body is under stress and in pain, it is important to learn to give yourself grace. There are often things I cannot control when it comes to the medical side of my life. Mistakes happen, appointments are overwhelming, my body doesn’t function in the way I wish it would. I have learned to take a deep breath, give myself grace, and take things one day, one hour, or one minute at a time to just get to the next moment.
7. Finding people who understand is key.
Since chronic pain is so unique and can often lead to people feeling misunderstood by or isolated from their loved ones, it is very important to connect with individuals who have also experienced health issues, chronic pain, or invisible illnesses. There are so many online communities, support groups, and social media circles that allow people to connect with others who have a better understanding of what they are experiencing. I am so thankful for the communities I am a part of, and I have met some of my very best friends through crazy connections online.
8. Life is not about getting things done.
Before I got sick, I often judged my days based on productivity and to-do lists. Now I try not to even make lists because I don’t want to be disappointed if all of the items don’t get crossed off. Although there are still things that must be taken care of in life, I have also learned that there is so much more to life and each day than simply complete all of my tasks. I find so much joy and fulfillment from connecting with others, slowing down, taking care of myself in the ways I can, and knowing that some things can wait until tomorrow.
9. You can’t control what your body does.
It’s a hard lesson to learn, but being sick at any level leads to a realization that our bodies are extremely complex, and we are not in control of what they can and cannot do. There have been many days when I have had to cancel my plans and allow myself to simply rest because of how I am feeling. Instead of being angry with my body for not being able to do what I had planned, I have to simply accept what it can do that day and give it what it needs to the best of my ability. Instead of fighting against my body, I try to fight against the pain and sickness with my body.
10. Having healthy coping mechanisms is important.
Once again, living with pain every day is a very difficult thing to manage. Because of this reality, it is very important to have healthy skills that help with managing the pain regularly or when it gets to a level that feels almost unbearable. I have developed routines for both… whether it is applying topical pain creams, heating pads, or ice packs, reaching out to friends who understand and asking for prayer or a distracting conversation, or reaching out to my parents and asking to be taken to the emergency room for medical support. Having a system in place and making people around you aware of your resources is very important.
What’s something that living with chronic pain has taught you? Let us know in the comments or email us at firstname.lastname@example.org. We love hearing from our community members!