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8 Things I Wish People Understood About My Chronic Pain

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It’s been a few years now since my journey with chronic pain began and I didn’t realize it would be such a long path towards healing. This little club I now belong to (It’s not a fun club. Don’t join.) has bestowed upon me some knowledge and insight that I hope others will consider when interacting with those with invisible illnesses. Although everyone with chronic pain has a unique experience, I believe this list will be something most people living with chronic pain can identify with.

1. I want you to know that I don’t have a “higher pain threshold” than the typical person, I have just become very good at masking my pain. Just because I can laugh, socialize and do ‘normal people’ things does not mean I am not in tremendous pain. If I say my pain is at an eight out of 10, just believe me. I understand it’s hard to fathom because I couldn’t fathom this in the days before chronic pain either.

2. I want you to know that I appreciate the small things. I don’t need pity, but it is certainly nice to come home to the dishes being done or just being able to curl up on the couch with the people I love and relax. Trying to live a normal life despite pain can be very exhausting.

3. I want you to know that I am strong, but I am grieving. It doesn’t matter whether chronic pain is new or old. I can go through any part of the stages of grief at any point in time. I am grieving the loss of my former, healthy self and learning to accept my new self. It could take years to have less pain, and for some, it might never happen. I don’t know the future and have to cope with this “new” body I am living in.

4. I want you to know that pain provokes anxiety. The medical community has failed me several times. I worry about doctors not being able to help me and I worry about what the next treatment plan will be if the current one fails. Please understand if I have anxiety about going to a doctor appointment or if anything medical-related creates an emotional response.

5. I want you to know I experience a lot of guilt. I am concerned that my pain has impeded on your life and that if I didn’t have chronic pain, your life would be better. I feel guilty about not being able to do everything on my list of to-dos and that I am letting you down. I often feel like if I commit to plans in advance, I might not feel well enough when the event occurs and I will have to cancel. I feel like I should just always say “no” to invitations so I don’t disappoint later. Even though I may decline many invitations, I still love to be included.

6. I want you to know sometimes it hurts to have hope. Sometimes hearing “God will heal you” or “You will get better” is just another source of guilt. Sometimes this sets the expectation that I should be healed and if that doesn’t happen, then I have done something wrong to interfere with this process. I want you to still be hopeful and encouraging for me, but I also want you to understand that while sometimes it helps to hear these words, it also can be painful. It’s OK – you don’t always have to know what to say, just understand the different emotional reactions you may get from me.

7. I want you to know that I still want to be independent. I still have the same hopes and wishes for myself and my future that I had prior to chronic pain, I just have more barriers now. I value my independence and take pride in the things I can do myself. I don’t want everything handed to me on a silver platter. I want you to support my goals and dreams and help me believe these things are still possible. Because they are.

8. I want you to know that I’m still thankful for my life. Chronic pain is a tremendous burden, but I still love my life and am grateful for the wonderful people in my life and the wonderful experiences I have had. Life is still enjoyable despite my pain and, in some ways, chronic pain has made me much more appreciative of things I often took for granted prior.

This story originally appeared on Adventures in Chronic Pain.

Photo by Emmanuel Bior on Unsplash

Originally published: September 14, 2018
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