Heather Crossin lives in New Jersey with her husband and 13-year-old son. In 2007, she was forced out of the workplace and onto disability because of chronic migraines, arthritis and fibromyalgia. People tell her that she is too young to have all these health problems, but her body does not listen. She has many of hobbies - many of which she had to either give up (like skiing) or decrease the time she spends on them (like crocheting). Heather loves to read and has used her free time to read all the books she never had time for before. She also loves to do research and tries her best to keep up with the latest news regarding chronic pain and the myriad of symptoms that go along with it.
Heather considers herself lucky because it did not take long for her to be diagnosed with fibromyalgia. However, she spent two years suffering from the same chronic migraine and undergoing numerous tests. By the time the pain migrated out of her head, there were not many tests left for the doctors to conduct. Her journey began around her 30th birthday when she woke up one morning with a severe headache that would not go away. According to Heather, things only went downhill from there. She has tried many therapies and remedies from traditional medicine to holistic medicine. In the beginning she was able to access all types of care because of her broad insurance coverage. The policy allowed Heather to experiment and figure out what works for her. She took yoga classes that taught her the best stretches to do for her specific needs. Her husband (who is a personal trainer and has returned to school for physical therapy education) helped her develop a personalized workout regimen that has been of tremendous value. Heather reported that she tried a plethora of medications and supplements over the years and feels that she has found the best combination for her personally. She also mentioned that whenever new symptoms popup, it is like starting from square one all over again.
Like many people with fibromyalgia, Heather has discovered that there is a lack of adequate access to fibromyalgia specialists in her area. She has found that while doctors are willing to diagnose patients with the illness, they do not want to treat them. She stated that a few doctors have taken one look at her chart and kicked her out the door. Doctors have complained that her case is too complicated or that she is on too many medications for them to feel comfortable taking her on as a patient. Many times she knows that she is the one educating THEM about the illness and how it impacts her other health problems. While she loves the fact that they are open-minded and will listen to her, she is still searching for a healthcare professional in her health plan who knows more than she does!
Heather is blessed with a wonderful support system. Her husband, from the very start, was 100% behind her in looking for treatment options that worked. He could see the pain and frustration on her face, even though he did not and still does not understand what she is going through. That does not stop him from standing by her. His family has also been wonderful. Heather feels it has been helpful having another family member diagnosed with fibromyalgia as others understood immediately the accommodations she would need. They know she needs to pace herself and often needs naps after (or even during) family gatherings. She acknowledges that not everyone understands, and she reports that she has lost a few friends over the years. On a positive note she has made so many more friends through her support group that she feels they more than make up for lost ones. Their support has been a real life saver for her.
When she attended her first support group meeting, she reports that it literally changed her life. Heather said she had become so despondent and hopeless that she just wanted to give up. Then finding a group of people who understood her the minute she walked through the door was amazing. She did not have to explain herself because they got it, they knew. Later, when the support group leader said she had to step down because she was getting too burned out from maintaining the group, Heather knew she had to step in. She could not allow such a valuable resource to disappear. That was four years ago.
Heather’s Leaders Against Pain (LAP) experience began the minute she saw the notice on the NFMCPA's website about the 2012 Leaders Against Pain conference in Washington, DC; she knew she had to go. At that time she felt that she was floundering with her support group, and that she was not making a big enough difference. She wanted to turn her illnesses into a “positive” and felt that attending the LAP meeting was the answer. Heather said that although public advocacy takes her out of her comfort zone, she believes it is something she needs to do. Through her LAP training, Heather reports that she has been able to make baby steps in the right direction. The other LAP members support her so that she can support those in her own community. Heather took part in the March 2014 FDA Fibromyalgia Public Patient-Focused Meeting in Silver Spring, Maryland, and looks forward to more LAP training and education.