Several nights ago, I suffered a severe hereditary angioedema (HAE) attack. For hours I made desperate darts from the toilet to the sink, alternating between excruciating vomiting and diarrhea. My entire abdomen felt heavy and impossibly swollen. I fought back tears as I injected my acute treatment — I could not risk my eyelids swelling too. Each agonizing minute felt like an hour as I waited for relief. Then, mercifully, the gut-wrenching symptoms began to subside. Cradling my belly, I crawled into bed as the sun began to peak through the blinds. I have not left it since.
The days have passed in a hazy blur of agonizing aches. Every move, every breath…hurts. I cannot find comfort. My head and back are throbbing, and my eyes hurt too much to watch television. The cookbooks that always brightened my mood are too heavy to lift. The fuzzy blanket I love to snuggle makes my sweaty skin crawl. I hate the feeling of everything: my bed, the sheets, my old pajamas. I just want to scream.
The blackout shades are too cumbersome to open so I lie in the darkness. There is so much I need to do. I need to sleep. I need to shower. I need to go to work. But all I can do is curl up on my bed, enveloped in sadness and longing. The pain has overwhelmed my body and mind, and robbed me of my strength and positivity. I feel alone, anxious and defeated.
Of all the challenges chronic illness has forced me to face, pain has been my greatest adversary. Pain drains you, spiritually and emotionally; it messes with your mind and drastically alters your personality. Pain makes your world feel small, and tricks you into thinking you are completely alone. Friend, I promise you are not alone.
I hope the next time pain makes you feel overwhelmed or broken, you remember the following:
1. It is OK to not be OK.
Let me be clear — having a chronic illness sucks! It is incredibly unfair. It is draining and dispiriting knowing every day will bring pain and stress. Of course there are going to be times where it all becomes too much. Remember, you can be strong and be exhausted and sad. We aren’t here to be inspirations or poster children for positivity; we are real people with real feelings. Expressing your hurt isn’t a failure. Let yourself work through anger, frustration, grief, or sorrow — whatever you need to feel. Your emotions are valid and your pain is real.
2. Reach out for help.
If you are having any thoughts of suicide or self-harm, seek professional help immediately. The world needs you here, your loved ones need you here. I found tremendous solace in my counseling sessions and learned useful coping mechanisms I employ daily. Reaching out to your friends and family is equally critical. Asking for and receiving support does not make you weak. Acknowledging your limitations and addressing them directly is a sign of strength. You are not a burden!
Related: Do You See Me, or My Disability?
3. Everything is bigger when you are in pain.
My dad has repeated this mantra to me since I was a teen. During bad pain episodes, my emotions often spiral out of control. Pain blurs my mind. My thinking becomes circular and I get trapped in frustrating and devastating loops I cannot pull out of. Fears become monstrous, and daily stressors trigger panic attacks. In those moments, I try to breathe and remember my father’s words. Everything becomes bigger, harder and scarier when you are overwhelmed with pain. Give yourself time and let your mind rest. Pause your life for a moment — it will all be waiting for you when you are ready.
4. Don’t push it.
Listen to your body. Often when my pain becomes overwhelming, it is because I have pushed my body too hard or too far. Pain means I need to slow down. I am guilty of wanting to jump back into day-to-day life far too quickly. I ignore warning signs and plow ahead. Don’t do this! It will ultimately cost you more days in pain. Put your health first. Be mindful and be patient.
5. You have value.
For so long I thought my value as a person was tied to how much money I could make, and how many things I could accomplish in a day. When pain would rob me of my ability to work, to leave the house and to care for my family, I would feel worthless. Thanks to counseling and the wisdom of loved ones, I have learned how foolish that belief was. My identity is not tied to the hours spent at my job, or how many dishes I can clean. I am so much more than that. Pain cannot take away my kindness, intelligence or humor. I can still give love and show courage. Don’t compare. Never doubt your worth. Pain may be a part of our lives, but it is not all we are. Be kind and loving to yourself, and never forget — you matter.