Jasmin Floyd

@jasminfloyd | contributor
I was born with a rare disease, Fibrodysplasia Ossificans Progressiva (FOP) that causes my muscles and connective tissues to ossify. Diagnosed at age 5 1/2. I love cats, writing, art, and public speaking. I blog occasionally, and recently created an Instagram account (@twoskeletons) where I share more of my personal life with FOP.
Jasmin Floyd

To My Loved Ones Who Support Me Through My Chronic Illness

Dear friends and family, I know it may be difficult for you to see what I’m going through, whether it’s through my personal posts or updates when I’m not doing well. I understand if you feel overwhelmed and intimidated at times. You may have never known someone as medically complex as me before. Maybe you’re not sure what to say, or fear you’d potentially say something wrong. You might feel helpless, wishing you could do more. As you may know, my health can change on a daily basis without any sort of warning. I have some level of pain every day and sometimes experience flare-ups for an extended period of time. These flare-ups signify my disease progressing and often limit my physical abilities even more. My body is constantly changing; you may be gradually noticing some of these types of changes in me. I’m not able to regularly participate in many of the same activities and outings I used to do with you. I don’t have as much energy, stamina or physical mobility as I did just five years ago. This is a very difficult realization to come to terms with. I don’t expect you to always know what to say or do. If I’m sharing something with you, that means I feel comfortable being vulnerable with you. If I don’t open up to you or if I’m vague, then that usually just means I’m not quite ready to explain what’s going on. Chronic pain, flare-ups and disease progression are all very personal experiences for me and can be difficult to put into words. I tend to isolate myself from others when things get especially difficult. During these times I may seem distracted, withdrawn or more tired than usual. I’m unable to process much of anything when my mind is so focused on what my disease is doing to my body. Depending on what’s happening in my life, it may take me a while to get back to feeling like myself. If you’re one of the people who have remained close to me even though I seemed distant or was out of touch, I honestly don’t have enough words to express how much you mean to me. Thank you for not giving up on our friendship even when I haven’t been able to be the same type of friend back to you. I value you more than you know. One of the phrases I hear most often is, “I wish there was something I could do.” I know you mean well when you say this, and I do appreciate that you’re concerned about me. I also understand that you simply want to be there for me in a larger capacity. However, trust me when I say that you’ve already been helping just by showing you care. I’m encouraged by your virtual support, inspired by your thoughtfulness and generosity and comforted by your words of encouragement and heartfelt prayers. You have given me so much strength and courage to get through each day. Much, much more than you could even imagine. Thank you. Love,Jasmin This post originally appeared on One Spirit, Two Skeletons. We want to hear your story. Become a Mighty contributor here.

Jasmin Floyd

A Letter to Fibrodysplasia Ossificans Progressiva

Dear FOP, I never imagined I would be writing a letter to you, the diagnosis that forever changed my life. You may prefer to be called by your full name, Fibrodysplasia Ossificans Progressiva, but I won’t give you that satisfaction this time. I’m tired of having to explain what each word means before even beginning to say anything else. I have come to know you over the past 16+ years, but I’m not sure I like you very much. You’ve caused a lot of emotional distress, heartache and fear in my family members’ lives, and I can’t forgive you for that. You have delayed countless milestones for me and have created never-ending obstacles and setbacks in my everyday life. Everything is 10 times more difficult than it should be because you always seem to be dragging me down. I’m thankful to have had a happy childhood despite your cruel intentions, but that was only because I was sheltered from the severity of what you were truly doing to me. I was oblivious to the reality of your ways. My body drastically changed every few years as I was growing up. I progressively became more and more immobilized, unable to partake in the same activities as my friends. I dealt with and still experience severe pain and discomfort during spontaneous flare-ups (my muscles, tendons and other soft tissues are turning to bone). Because of you, my body is noticeably different, and I’ve struggled with many insecurities and self-loathing. You made me feel like an outcast: unheard and unimportant. I’m nearly 22 now, which is roughly half of the average lifespan of someone who is affected by you. I know I’ve missed out on a lot of opportunities because of you. I might not be able to experience all I want to, but I’m working on not being bitter about it and still doing my best to reach my goals and dreams. Sure, I have my bad days when I wish you would just leave me alone (spoiler alert: you never fully do). And yes, I’m sometimes envious of my friends because they can do things that are physically impossible for me. But I’ve accepted you as a part of me, even though I do not particularly care for you. I’m acknowledging you and continuing to live. Thanks to you, I have found three incredible and irreplaceable communities of people who are going through the same or similar challenges as me. They have become lifelong friends who I probably wouldn’t have met otherwise. Even if I had, I wouldn’t have been able to relate to them as much as I do. I have learned I’m not alone in my journey and there is always hope, no matter how dark or dismal the circumstances may be. I no longer view you as a burden, in any sense of the word, but more of a blessing in disguise. You’ve shown me I have more strength and courage within myself than I could ever imagine. You’ve helped me to not take anything, even the smallest or silliest of things, for granted because it could be gone the next day. Living with you has also taught me that people with disabilities or impairments are equal to the able-bodied… they just do things a little differently. You have not defined me, and you never will. Thank you for changing my life. Follow this journey on One Spirit, Two Skeletons. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.