1. Do you have a primary diagnosis, if so, what is it?
A: My primary diagnoses are Undifferientated Connective Tissue Disorder, Ehlers-Danlos Syndrome, Trigeminal Neuralgia, and Dysautonomia.
2. How long did it take you to get diagnosed?
A: I was able to get diagnosed with Dysautonomia within 6 months of onset of symptoms. After that, it seemed as if I was getting a new diagnosis every couple of months. With each new diagnosis, I tried treatments and each continue to fail me. I knew deep down that there was something else that no one has figured out. Finally, after seeing an amazing rheumatologist, I was diagnosed with UCTD in 2017. It has been 9 years since I first became chronically ill.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: I initially felt extremely relieved—my symptoms and feelings were validated! It was not just the “stress of being a teen” or in my head; I was actually sick. I was diagnosed at the Mayo Clinic and an hour after being diagnoses, my mom was on the internet finding the best doctor to treat me. The feeling of relief quickly passed after I was diagnosed with so many other disorders; however, with each diagnosis, I become increasingly numb. I think to myself “What’s another diagnosis?” My rheumatolgoist put it best—he said this is as if someone is playing a sick joke on me.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Being undiagnosed is difficult because sometimes you may question if something is legitmately wrong with you. It is incredibly important to advocate for yourself or have somone who can do it for you (parent, siblings, etc). Even as a diagnosed patient, I still find that doctors doubt me or question my diagnoses. It is hard to advocate for yourself, but it is something you must and will learn to do. You know your body best, and if something doesn’t feel right, then it probably isn’t. Do not give up on finding answers until you are satisfied!
5. Has your chronic illness changed your perspective, and if so, how?
A: I often wonder if I would be a different person if I was not chronically ill. I became chronically ill at the age of 14 (I’m now 23), and my illnesses did not give me much of a chance for exploration. While I was always a generally optimistic person, I have found that I am definitely more optimistic than the average person. Being sick is both a curse and blessing; I recognize the importance of gratitude and finding happiness in the little things in life. Having chronic illnesses has also showed me the things in life that really matter, such as my family, friends, and the ability to find humor in things!
6. What moment are you most proud of in your chronic illness journey thus far?
A: Overall, I am proud of who I have become and what I have been able to accomplish as a chronically ill person. I pushed through college despite having 10 surgeries during those 4 years and then decided to pursue my Master’s degree online. There was one moment in particular that stood out to me and I find pride in. As I was having a phone conference with one of my doctors and my mom, I found myself adovcating for myself and asking the right questions. At the time, I didn’t think much of it until later that night, my mom praised me for how I handled the phone call. It may sound silly to find such pride in this moment, but as someone who has a lot of trouble speaking up and advocating for myself, it was a big step in my chronic illness journey.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: Out of the 25 surgeries I have had, two of them were incredibly physcially taxing. I had a prosthetic jaw joint put in and was required to have my jaw wired shut for 8 weeks. A year after that I had my first brain surgery for Trigeminal Neuralgia. The top surgeon for this procedure is in California, so I traveled there and spent three weeks recovering. The pain after surgery was unimaginable—my skull was drained of all CSF and as your body adjusts and skull refills it causes much pain. My balance was completely off and I remember feeling like I was reteaching myself how to walk. I had to retrain myself how to go up stairs—I have never struggled with something so much.
For the most part, my mentality has kept me sane. My mental health is the one thing I am able to control right now and I try my hardest to stay uplifted. There are definitely times where I become horribly sad and upset at my situation. There are days where I feel alone, but unlike my chronic illnesses, these days pass.
8. What or who has helped you the most during the lowest days?
A: When I was a junior in college, I rescued a puppy. I trained her to become my service dog and she picked up some tasks completely naturally. Having someone else to take care of and be responsible for helped me greatly. My focus wasn’t only on me, but now it was on my dog. In addition to my service dog, my family supports me. Words cannot explain how much help I get from them. My parents are always there to help me when I cannot help myself. My family is my biggest cheerleaders and I could not do any of it without them.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: Finding that one or two people who you can talk to and be completely honest with makes a world of difference, whether that be a family member, friend, doctor, or therapist. Pain and fatigue may seem like it controls your life, but remember that you still have the reigns. Sometimes I want to do something and I have to weigh the benefits and risks—is it worth it to go to this concert if I am going to be stuck in bed for a week after? You are still allowed to enjoy life and it is important to figure out how. I know that I have had to find new hobbies and create new dreams for myself because my body limits me immensley. Accepting your illness and your life as a chronically ill person is not giving up. It is not weakness. In my opinion, it is the greatest form of strength.
10. What would you like the world to know about life as a chronic illness patient?
A: Chronic illnesses do not all look the same. Most illnesses have a spectrum and just because one person may be capabale of many things does not mean the next person will or will not be the same. There are some common things that hits a nerve with many chronically ill people: unsolicited advice (we have all heard the “Have you tried cutting out dairy, gluten, etc?”), comparing patient experience (“My friend has POTS and she is still able to play soccer”), and making assumptions. While most comments are well-intentioned, people must think beyond the surface and consider how it may come off. Most illnesses are invisible and I do not think the majority of people truly understand that. It can be extremely difficult for a person with invisible illnesses to be taken seriously or feel validated. When you see a healthy appearing person park in a handicapped spot, do not assume that they are using their grandmother’s placard. In general, the world must become a more understanding and accepting place for everyone, including those with chronic illness.
By Jaqueline | @J_Child