Lucy has experienced health issues since she was a teenager. These have carried out throughout her life and into adulthood. Here she shares which symptoms led to her multiple diagnoses, what it’s like living with three distinct conditions and the advice she would share with others in a similar situation.
More than One Diagnosis
I was diagnosed with rheumatoid arthritis (RA) when I was 14 years old. [After a few months of experiencing ankle pain, swelling and stiffness,] I sought treatment as I could not participate in the activities I was used to doing. I was [also] not sleeping well and having very vivid dreams of choking and dying. [I was diagnosed with sleep apnea.] It took me years to seek treatment for this as I was not sure my symptoms were physical or psychological. [In addition to RA and sleep apnea symptoms,] I also sought treatment for shortness of breath and [an accidental finding of cancer resulted.] I am [now] a lung cancer survivor. The timeline for this was about one year from first symptoms to diagnosis.
The Difficulties of Living with Multiple Conditions
There are a number of difficult things about dealing with multiple conditions. The number of appointments needed with specialists is a time drain – which impacts leave from work. Additionally, there [are higher] expenses [because appoints with] specialists have higher copays. Due to the lung cancer and types of medication I need to take for my RA, I have to follow up with multiple screenings frequently – mammograms, pap smears, dermo screens, colonoscopies, chest CTs, etc. These all require PAs and are costly.
RA is an autoimmune disease so I get sick more often and for longer durations [than people with typical immune systems]. At times I feel fragile with my health. I do not have a good source of comfort. [My] friends and family [members] try to be sympathetic but they get tired of the ongoing, never-ending issues. I have tried counseling but it does not help much either. I just fend for myself and keep on doing what I need to try to live my best life.
Determining priorities for care is tricky. I try to schedule out as much as I can in advance so that I am less likely to put things off. I also address issues when they first pop up rather than letting them get out of control. I try to get some exercise in to [maintain] muscle tone and keep weight down (thanks, prednisone!). The symptoms themselves often determine what needs to be addressed and with what priority. [For example,] a fever and a cough are more important that a minor RA flare.
Hard Won Advice
My best advice is to learn how to advocate for yourself. No one else cares as much as you do. You need to learn as much about your conditions as possible so you can ask the right questions and get the best treatments. Speak up in a respectful but strong manner. I have educated my doctors on certain issues – some are receptive, others not so much. You know your body and your needs better than anyone else. If you have a spouse or partner that may assist you, let them know your expectations and how to help. I recently had an issue with adrenal insufficiency and I told my husband that I might become confused or unclear and he needed to be my voice and advocate.
Life is what you make it. It can be harder with multiple health conditions, but you can have a positive impact on how you go through life. You may not be able to change some things, but you can always improve your perspective – think of things you might be able to do for others and for humankind, rather than just dwelling on your own tough issues.
Diagnosed with rheumatoid arthritis, sleep apnea and lung cancer
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