- Hashimotos Disease
- Interviews
Ursa Minor's interview
How did all start?
Hashimoto's runs in my family, but usually the gene is not triggered until much later in life, after a stressful event like pregnancy. Mine began at the onset of puberty. The added hormonal stress was too much on top of living in an abusive household. I escaped the physical situation but continued to spiral into anxiety and depression until being diagnosed at 17.
Do you already have a diagnosis? How long did it take you to get it?
Onset of condition was estimated to be around age 11. I was not diagnosed until 17 since my whole family was busy escaping an abusive situation and had no time or money to worry about it.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I am being treated largely with lifestyle modifications such as diet and supplements. Eliminating foods that my body was confusing for thyroid (and then attacking, pushing me over the inflammation threshold) has reduced my antibody markers all except one. My doctor thinks that last marker is elevated by a gut infection, which is now being treated with antibiotics and even stricter diet.
What has been the most useful thing for you so far?
Permission to be unwell. Knowing that the terror is chemical and not based on reality.
What have been your biggest difficulties?
It was very hard to go to various kinds of talk therapy for depression and anxiety and have none of it work because my underlying problem is physical. No amount of talking has eased the fact that I just don't have the neurotransmitters I need, and I can't take standard antidepressants because they would worsen my overall condition long term. I cannot boost them with comfort food, like I used to, because my diet is so strict. It is very hard to have no solution for this.
How has your social and family environment reacted? Have your social or family relationships changed?
Most of my friends are overachievers and they really, really do not understand. It's hard not to internalize how useless and entitled they think I am. I am very tired of explaining over and over again to everyone I get close to why I am the way I am, and I feel like my personality has shrunk down to a single miserable point.
What things have you stopped doing?
I played the violin from ages 10-18 or so. I no longer seem to have the energy to practice consistently, let alone the two hours per day I need. I used to draw constantly but now I can only stare at the paper. I used to take voice lessons but I get dizzy very easily now and physically don't have the energy to reach the top of my range.
What do you think about the future?
I am not very optimistic about the future. I have not met anyone who developed Hashimoto's this early, so I don't have any example of how to get through young adult life this way. If most women develop it after childbirth, what will happen to someone who already has it, if she has a kid? There's no data on this. And mostly, I just can't picture getting through life without any natural sense of accomplishment or satisfaction in anything, or any promise that things will improve. I seem to be getting number by the day.
So far, which years have been the best years in your life? What have you done during them?
Ignorance is bliss. When I was a kid I was considered precocious, but mostly I was happy and hyper. I didn't realize my family was abnormal, and the abusive family member didn't really have me in his sights yet. I consider ages 0-10 the best years of my life and really wish I could remember them in better detail. I believe I spent most of it reading and running around outside. I was also very social and miss the feeling of easy connection, or swaying a group with my personality, although that sounds a little arrogant. I miss having a positive effect on things around me.
What would you like to do if you didn’t have your condition?
I would like to exercise and be strong and capable and do a lot of outdoor stuff. I remember there used to be the endorphin rush that people talk about with exercise. I don't get that now so it's almost impossible to motivate myself to do strenuous things. Plus, I don't like fainting and that's a more and more frequent risk with any physical activity.
I would also like my creative energy and motivation back. I would also like to get married and have a family without fearing for my health and sanity after each birth. I would like to eat a baguette with brie, my favorite childhood snack. I would like to be able to eat normally and socially instead of being an inconvenience at every event.
If you had to describe your life in a sentence, what would it be?
Downhill straight from the beginning.
Finally, what advice would you give to a person in a similar situation?
Find a good doctor. Hang on to your remaining friends even if you don't have the energy to make new ones. Invest in positive lifestyle changes and critical thinking about your treatment- do not let anyone tell you you are better now if you don't feel better, thyroid levels be damned.
I don't know whether to say push yourself hard and don't let yourself be dominated by the condition, or go easy on yourself and don't feel guilty for being sick. Neither one has worked out for me so far.
