The Letter I Wrote to Remind Myself of My Goals With Chronic Illness
I recently had to go through a part of my disability appeal in which friends and family were asked to write personal statements of how my Lyme disease, POTS and 13 years of medical uncertainty and misdiagnosis perceptually affected my life and impacted theirs. They were truly some of the hardest letters I have ever read, seeing the true “weight” of the cost of my illness. They too were breathtakingly healing, as I was able to stop and no longer wonder if this, or that, was being thought of. The letters displayed more care and concern than the negative impact I may have caused.
But I noticed still, these letters only built a snapshot of my life. I only want them to be a snapshot of my life. So with penmanship, I have reflected on how I move from being an emotionally affected Lyme patient in need of years of rehabilitation and disability assistance to becoming a strong fighter, regardless of my physical state, and finding the roads to remission. If my mindset changed, would those letters change too? Do those letters need to change? The only one missing was the one I didn’t request of myself.
May we each find our voice, even if faint, to write our own pep talk. As much as letters and support show a lot about care, they will never compare to your own personal touch.
Yes, believe every single definition of that word, believe everything defining about that characteristic, and live knowing you can confidently call yourself a fighter. I am not talking physically, but mentally, you fight every day, you wake up every day ready to give it your best.
I hope you have read this letter 100 times already, and will 100 more. I hope you read this letter in the bouts of your uncertainty about how the most challenging times of your life could ever see sunlight.
I hope you read this letter when you have been given a good day. Remember how deeply you savor a good day. It is as if every trumpet sounds, and worry seems to momentarily leave.
I hope you know, fighter, you are stronger than you believe.
Fighter, I want you to hold your unique soul close. Envision, write, speak what is true of who you are – not what your disease is, your symptom list or what you have missed out on. But what makes you, you. When you have come to know your soul and its intricacies and uniqueness, no one and nothing can pierce us deep to the core with words, because we know our worth.
There may be times when the weight of illness brings you down, or when you are weighed down by worry about how your illness affects others. Those are the moments when fighting can begin to drag and become harder. Be your own best self, even when it may be your own worst day. Give yourself the hug you seek, knowing when you fight first for yourself, nothing can stop you now.
The letter is printed in my room to be a reminder of the goal I set for myself: remission. I just took the steps of encouragement backwards. I first sought the acceptance and care of others before I ever accepted or cared for myself. Emotionally we may need others, along with our own will, to fight to seek and see remission, but never forget that you are a fighter.
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Thinkstock photo via cherrybeans.