This week I’m interviewing Ms Rants from Boston, MA, USA. Ms Rants had to stop working in 2011 in an attempt to “recover” from her illnesses. Now she focuses on her health, volunteering as often as she can, and a few low-energy hobbies that she is able to do from home, like crocheting, reading and blogging about her life with chronic illness.
What are your current diagnoses?
Ah, my current diagnoses; always an interesting list. I have (in no particular order): Undifferentiated Connective Tissue Disease, Hashimoto’s Disease, hypothyroid, adrenal insufficiency, Celiac Disease or gluten intolerance (we’re not sure which, but definitely one of them,) PCOS (polycystic ovary syndrome,) IBS (irritable bowel syndrome), Raynaud’s Syndrome, Tinnitus, Seasonal Affective Disorder, and Upper Airway Resistance Syndrome (a form of sleep apnea.) Some of those are likely offshoots of others. That’s today’s list. Unfortunately, it keeps growing.
What lead up to your first diagnosis?
I had pain for 11 years before I was diagnosed with Undifferentiated Connective Tissue Disease. That was the first autoimmune diagnosis. I saw doctor after doctor after doctor, and they all told me they didn’t know what caused the pain and they couldn’t help me. They ran tests. They did exploratory surgery that only made things worse. Finally I took matters into my own hands and decided I needed to see a rheumatologist. He immediately knew there was an autoimmune condition at work and his tests confirmed it.
A few years later, after years of negative thyroid tests, the definition of a “normal” thyroid test was changed and suddenly my old test results qualified me as hypothyroid. I’d had fatigue since I’d “recovered” from mono in college 5 years earlier, and there was a family history of hypothyroid. The doctors tested me for hypothyroid several times but beyond that they didn’t do anything for the fatigue. Knowing what I know now, I see how the doctors messed up that testing. And knowing what I know now, I’m shocked they didn’t test me for Hashimoto’s disease until 5 years after my hypothyroid diagnosis! My antibodies were incredibly high and I immediately got the Hashi’s diagnosis.
The PCOS diagnosis came around the same time as the hypothyroid diagnosis. I had never once in my entire life had a “normal” period. Sometimes it lasted a few days, sometimes 3 weeks or more. The bleeding was incredibly heavy. Sometimes I’d have 6 months between periods, sometimes only a few days. And yet no one diagnosed me. They just prescribed birth control pills and said I was fine. I pushed for testing and sure enough, it was actually a problem that needed addressing.
The adrenal insufficiency was determined after I’d left my last job. I was continuing to get worse, so I started doing my own reading. I learned about adrenal insufficiency in relation to hypothyroid and Hashimoto’s Disease. I found a naturopath who ran the test and, sure enough, I had a clear case. That was two and a half years ago.
I was diagnosed with Upper Airway Resistance Syndrome just a few months ago. I had addressed my known conditions and something was still clearly wrong. I saw a sleep doctor who wasn’t helpful at all. So I made an appointment with a different sleep doctor, with a great reputation. He ran tests including a sleep study and discovered I had a moderate-severe case.
What was going in your life when you were first diagnosed?
The diagnosis of Undifferentiated Connective Tissue Disease, the first autoimmune diagnosis, was during graduate school. It was tough to absorb, even after so many years of symptoms. I was doing very badly at that time, and with the diagnosis, I made the decision to graduate a term earlier than I’d planned. In hindsight, that was definitely the right choice.
How has your family handled your illness?
My parents have been unbelievable. I am so fortunate. I couldn’t ask for a more supportive family. My sister seems to think I’m faking or exaggerating and hasn’t been supportive. When we were younger, I think she was jealous of the attention I received. But my parents have done all they can to help me. When I was a child, they did their own research and tried to figure out what the doctors couldn’t. When the doctors, my teachers, and even some relatives and friends suggested I was making it up, or that it was in my head, my parents were the only ones who stood up for me and insisted the problem was real. They are my greatest support to this day, but there are others who are incredible. Aunts and uncles express concern and support, grandparents have helped me financially and shown care, and cousins always ask how I am. I don’t think that I could have made the progress that I have without their support.
There’s also my “family by choice” as we call ourselves. I have some childhood friends with whom I’m very close. They have been incredible. They listen to me cry on the phone, they alter plans at the last minute so I can be included, they pick up prescriptions and food when I can’t leave the house, and they make me laugh when I need it most. Even as kids, they were always there for me, helping me however they could. They are truly the best.
What do you feel is the most challenging aspect of your illness?
The hardest part is gaining understanding. My family has been amazing, but others haven’t been. Friends try to understand but can’t. My former boss was completely unrealistic. Strangers stare if I park in a handicapped space or use a scooter in a store. Acquaintances have unrealistic expectations. Then there was the long term disability insurance company and the Social Security Administration, both of which made me jump through incredible hoops to get the benefits I had paid for and qualified for. And worst of all, doctors aren’t as well educated about specific illnesses as I’d like, they think I’m a difficult patient because I do my own research, they won’t run tests that I know are necessary (and sometimes they agree I need the tests, but they get pushback from insurance companies,) and they don’t admit it when they are ignorant of the subject matter. Greater understanding would make all the difference.
What have you found/ done that has improved your symptoms?
The single best thing I did was research it all myself. I focused on library books and supplemented with blogs and Facebook groups. I pursued the avenues that seemed most likely to be appropriate, given my diagnoses and symptoms. And I found the medical practitioners who could help me to do that. It hasn’t been easy, it’s taken a long time, and I have more research to do (including a large book sitting on my desk now) but it’s been a lifesaver (literally.) If anyone has any questions about how to research or what resources I’ve found, please contact me! I don’t want others to flounder like I did.
What was the worst advice that you followed?
The worst advice was definitely when the doctors told me they couldn’t help me and that I should stop seeking treatment. I stopped trying to get better for years before I finally got desperate enough to try again.
What is one thing you’ve learned about yourself since you became ill?
I’ve learned more about my priorities in life. I have a list called “goals when/if I get healthy.” It includes things like “get a dog” and “get a job” that I would have always expected and also things like “figure out how to fix our broken disability insurance system” and “help fund hypothyroid research.” None of the things on my list are a complete shock, but I came up with some things that I wouldn’t have prioritized before I got so ill. 5 years ago I was sick, and I wanted to figure out how to get better, but it didn’t affect me in the same way and my priorities were much different.
If you could tell someone who is struggling with chronic illness one thing, what would it be?
You are not alone. No matter how common or rare your illness or your combination of illnesses, no matter how much or how little support you have, no matter whether you’ve been diagnosed for 3 months or for 3 decades, you are not alone. There are others who will understand what you’re going through. But it’s up to you to find them.
What made you decide to blog about your life with chronic illness?
I saw a lot of “inspirational” stories about people with illnesses and disabilities who ran marathons and climbed mountains, and it frustrated me. I felt it gave “healthy” people the idea that we can all get over our illnesses if we just try hard enough. I wanted to write about the reality of chronic illness. There’s so much that “healthy” people don’t see, and that even those of us with chronic illnesses don’t discuss with each other. We need to talk about it. Also, I had always felt very alone with my illnesses. They started in the pre-internet days, but even with social media, I felt isolated. I wanted a place where I could meet others and they could meet each other and we could all have our own bit of community to say whatever we want with total honesty.
Now that you’ve gotten to know a Ms. Rants’ story, head over to her blog, Chronic Rants, and get to know her better. She’s also on twitter @CIRants and feel free to email her. She’s looking forward to hearing from you!