Location: New York
Diagnosed with Hashimoto's Thyroiditis at age 33, Sjogren's Syndrome with a small fiber peripheral neuropathy at 35, Systemic Lupus Erythematosus at 38
How have your conditions impacted you? My illness has completely changed the course of my life. Because of arthritis and my peripheral neuropathy, I was unable to continue my job, just 1 year after I had finished a lifetime of training for that career. I started my own business that gave me a flexible schedule to attend doctor appointments and rest as needed. After a year, I went back to work part-time, while keeping my own business running. Juggling the two is difficult, but I am definitely quite happy with my career at this point in my life.
The most difficult part of my illness is the effect that it has on my family. My thyroiditis was undiagnosed during my pregnancy with my son and we nearly lost him at 19 weeks of pregnancy. Fortunately, after many months of bed rest, he was fine. But I developed one autoimmune disease after another in the years that followed. My son has never known me to be well. He is a very active boy and I HATE that I cannot keep up with him. My husband is a wonderful single parent when I am out of commission. I am grateful for that, but desperately wish that I could always be there when they need me.
What would you like for other people to know about your conditions? When you develop one autoimmune disease, you are more likely to develop another in the future. I feel like the poster child for this statement! I would like people to keep this in mind if they are ever diagnosed with an autoimmune disease. Not all doctors are astute enough to make the connection if you become ill in the future that this may be another autoimmune disease.
What would you tell someone who is newly diagnosed with your condition(s)? You are your best advocate. If your physician is not answering your questions or spending enough time to listen to you, start looking for someone else and do not feel guilty about it. My biggest mistakes in managing my health have been to trust doctors who were really not dedicated to my care. These mistakes were serious ones that negatively affected my health for several years and almost caused us to lose our son.
It is also really important for you to figure out what your insurance will and will not cover. I have had 4 different health insurance plans since my diagnosis. Our previous HMO and PPO plans seemed fine until they did not cover necessary procedures and medications. We spent thousands more than the maximum out-of-pocket amounts because of the expenditures they did not cover. Ultimately, a high deductible plan that covers everything once the out-of-pocket amount has been met has been the best value for our family. I know exactly how much to budget for my health insurance each year, and that has been a huge relief. Being sick and paying for health insurance is hard enough. Fighting for coverage is a battle patients should not have to wage.