Two years ago while in Massachusetts, I met Kiley Reitano when her parents brought her to the kids’ football camp and fibromyalgia fundraiser ran by then NFL New England’s Patriot Dominique Easley to meet Destinee, Dominique’s sister who has fibromyalgia. I listened as Kiley’s family talked to Destinee’s family. The struggles they faced were the same struggles that my adult fibromite friends face. They are living with pain, fatigue and depression.
What makes them so different from many of us?
Instead of having co-workers or bosses not believing them, it is their teachers and their fellow classmates who don’t believe them. They are not worried about losing their job from missing work or not doing as good a job as they once did; instead, they are worried about missing school and keeping their grades up.
They were “lucky” to be diagnosed at a young age and not go most of their lives not knowing what is wrong with them or worse, being told there is nothing wrong with them. They have amazing parents who are supportive and trying to learn all they can to help their children, and they also want to help raise awareness.
I originally interviewed Kiley as a 16-year-old junior in high school. I am now interviewing a young woman who will begin college in the fall facing the same dilemmas as in high school. Her positivity and approach to life are a lesson to us all.
Melissa: Can you remember how old you were when you began experiencing your first symptoms? And what were they?
Kiley: I was 14 years old when I started feeling symptoms of fibromyalgia. My first symptom was an aching pain that radiated from my left ear down my jaw. From there on, it worsened to a stabbing and throbbing pain and then quickly spread to my whole body over the course of three months. I was ill for over eight months. I saw more than eight specialists before being diagnosed.
Melissa: Did your family and friends believe you and the pain that you were experiencing?
Kiley: My family for sure believed me. As for my friends, I received the feeling that they believed me at first, but then once the news of me being in pain got “old,” they slowly stopped believing and caring. Looking back on it now, it really helped me see who my true friends were, the ones who were and still are here for me through it all.
Melissa: It is believed that someone can be genetically predisposed to fibromyalgia. Research shows that fibromyalgia is triggered usually by a physical trauma, surgery, infection or psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Do you know what triggered fibromyalgia in you?
Kiley: Through the process of being diagnosed with fibromyalgia, I was diagnosed with an auto-immune disease called Hashimoto’s Disease. It’s a thyroid disease where my immune system attacks my thyroid cell. I have hypo-thyroidism that goes along with Hashimoto’s, and the two combined caused me to have fibromyalgia and later I found out I have endometriosis, another chronic pain condition.
Melissa: Have you been diagnosed with other conditions (evil sidekicks)?
Kiley: I have endometriosis which is a chronic pain condition caused by uterine tissue growing inside of my body instead of inside the uterus and which is extremely painful. I’ve had one surgery for it so far and will most likely continue to need surgery in the future as it progressively grows back since there is no cure. Similar to fibromyalgia, endometriosis is very hard to treat; I have to go through extensive treatments for it, such as a hormone based chemotherapy. Hashimoto’s Disease damaged my body severely so I developed both fibromyalgia and endometriosis which are all linked together because of the inflammatory issues with both.
Melissa: How would you describe a good day? What do you love to do when you are feeling good?
Kiley: A good day for me is one where I am happy; I may be in pain, but as long as I’m not dwelling on that pain or unable to do simple tasks like I am unable to do on my bad days, that is a good day. I love spending time with my loved ones when I’m feeling good.
Melissa: How would you describe a day when you are in a flare?
Kiley: Depending on how extreme the pain is dictates how I spend my day. I have had flares so bad that clothes and blankets hurt. I can’t have people touch me. I have ended up in the ER many nights for these types of flares. I missed about 75% of my high school years due to bad flares.
Melissa: What do you use when you are in a flare to help cope?
Kiley: Distraction works really well for me and keeping a positive attitude as much as possible even though it is a negative situation. I love my heating pad, of course too. Art has been one of my biggest coping tools as well; a lot of my passion with/against my pain I decide to positively put into art and it’s really healing.
Melissa: What treatments have you tried in the past? Have any treatments been successful?
Kiley: I have tried many medications and therapies. Cognitive Behavioral Therapy was my best route. I learned a lot of tools from that, but for the most part, my psychologist helped me come to terms with my illness and getting that under control helped tremendously.
Melissa: How has your relationship with your family and friends changed due to fibro?
Kiley: The relationship I have with my loved ones has become so much stronger. My loved ones are so supportive and try to be as helpful as they can be with my illnesses. They could even be 3,000 miles away and yet able to make my day so much brighter. It takes a lot of trust and sometimes learning when your loved one is sick, and I couldn’t ask for more empathetic and supportive people in my life.
Melissa: How has it affected your school life?
Kiley: High school was my biggest challenge; getting up and going was so hard. Being around others who knew nothing about my life or my struggles and constantly judging me for it was very defeating at times, but I pushed through and at the end of the day it made me stronger.
Melissa: Have you met other young people diagnosed with fibromyalgia?
Kiley: I have met a lot of young people. I have been a guest speaker at a few Chronic Pain support groups through Children’s Hospital and I met a lot of young people with ranging chronic pain conditions, a lot of them having fibromyalgia. Because I have been fortunate to spread awareness with articles and posts online and in newspapers, a lot of younger people have reached out to me and I have met a lot of others who I could not only relate to, but also help which was so nice.
Melissa: Congratulations on graduation! How is graduating different for you from your friends?
Kiley: I did a lot of my school work from home and had to work five times harder than most my age because I not only had to learn the materials on my own, but learn it during flare ups with brain fogs and constant pain. I managed to graduate with a really great GPA and grades which feels like the best accomplishment knowing how hard it was.
Melissa: Have you decided the next step in your life?
Kiley: I am attending Merrimack College in the fall majoring in psychology to become an art therapist. Becoming an art therapist is my dream because I want to further help others cope with things like fibromyalgia.
Melissa: Will you be living on campus?
Kiley: I will be commuting. Right now living on campus isn’t practical with my health issues, but I am not opposed to it in the future. I would love to be able to live on my own and be independent within the next few years.
Melissa: Have you talked with college counselors to discuss your health issues?
Kiley: I have been in the process of that lately! They’ve been super helpful and college is already so much more flexible and accommodating than high school.
Melissa: What would you like others to know about you and your journey?
Kiley: I would like others to know that I will always try to be a voice for people with invisible illnesses. Somedays it is so hard to be positive; some days I want to cry and be angry because these are the cards I was dealt, but I make a choice. I make a choice to use that energy to have others hear me so fibromyalgia and other invisible illnesses are not as invisible as they look. Instead, they are loud and heard.
Melissa: Tell us about your work as an advocate, your awareness activities in May, and your blog.
Kiley: Because my passion is to raise awareness for invisible illnesses, especially fibromyalgia, I try to use my voice to help those who can’t speak out. This May, I succeeded in getting Fibromyalgia Awareness Day proclaimed in Massachusetts for the second year in a row! I also wrote an article for a very well-known medical site called The Mighty. This past year, I started my blog, http://thespoonie.weebly.com/, not only as an outlet for me, but also to show helpful and healthy coping mechanisms for others with chronic illnesses.
Melissa Swanson is a chronic pain patient, advocate, and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 16,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice." She's a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.
You can find Melissa at: