When I Realized I Needed to Let Others In
It seems like my whole life I have had people constantly responding to my life with, “Well that must be hard on your parents.”
I am one of those people who feels so deeply with empathy towards anyone. I always have been the one to consider how the “bad guy” feels. What happened in their childhood to make things so. I am incredibly good at putting myself in another’s shoes. It is what makes me perfect for such great advice.
When my best friend died by suicide after a year and a half of me working with him to look at things differently and to make life worth living, I didn’t grieve.
I was the one who kept everyone together. I worked hard to make sure everyone else was getting the help they needed. I jumped in when my friends were starting to spiral and I was the one who talked to their parents about getting them real help. I had many thank me afterwards for how I helped them. But who helped me? Who was there for me when I had my waist down reconstructive surgeries? Who listened as I cried and sobbed at 2 am? No one.
I didn’t use to be very open about the real me. I never would lie about who I was or what I was feeling, but I wouldn’t offer things up, and I found that people didn’t ask. I was so dang busy keeping everyone else from falling apart by themselves, no one was there for me.
It finally hit me when I was 18. Four years since I had my surgeries, six years since my constant pain started. And three years since my best friend killed himself.
I hid myself so deeply within my soul that it took years to start grieving. I worked hard to learn to stand up for myself with my family and those I loved. The problem was that I put myself so well in other people’s shoes that I forgot to look down at my own two bare-feet.
No one has or had written a book that explained any of it to me. Sure there were some attempts on the subject, but most often I would find the answers to myself in books no one would expect to hold parts of me. Books of fantasy with queens saving the day and opening themselves up to their loved ones were the things that reached me a thousand times better than even the two times I was forced to visit a therapist right after Daniel died.
Those books split me open and I finally learned good ways to exist in this world with extreme pain, with the loss of your best friend, with how to be with people who don’t have a clue about your life, judging you.
The answers included being open. I mean really being open. Not just waiting for someone to say the right phrase to get you to be real about yourself. Not hiding how bad your health and pain are even if you don’t want to admit how bad things have gotten. Living a real full life can never be accomplished by being closed off to the world. You see it in so many movies where the people go through a trial and then they make the wrong choice by not being honest or not opening up to the people they should share their life and struggles and hopes and dreams with.
You cannot live happily being closed off from the world. You just can’t and you shouldn’t either, because the release you can feel when you let others help carry your heavy burdens will be wonderful and glorious!
We are not on this earth to get in arguments, live by our lonesome and be angry and hurting all the time.
Yes, we must consider others and put ourselves in their shoes and keep that empathy, keep our humanity. But also we shouldn’t forget about ourselves. I may still be the only one awake at 2 am, but I know there are so many people out there on my side, thinking of what is best for me now and helping me remember that I am not alone and I never was. I need only to have asked and they would have returned the favors. Being the martyr is great and all for the movies, but in this world of struggles with loneliness and pain, life is much more of a fairytale of people who love, understand and support each other. Please, just let them in.
Getty image by Syuzanna Guseynova
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Severe Plantar Fasciitis kept me avoiding walking at many costs. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher with many more complications taking over every bit of my body. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
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