This interview is the sixth and final interview for my series on kids with chronic illness. This time I interviewed my friend A’s 18-year-old daughter A whose 14-year-old sister featured in my previous interview. I, my friend A and A’s daughter A went on a fun shopping trip to NYC and had a very interesting conversation. A’s mom has Hashimoto’s herself and is extremely knowledgeable and determined when it comes to getting well and fighting for her children getting the medical treatment they need and deserve. A explains: “My daughter A was diagnosed with Hashimoto’s when she was 16, but she doesn’t yet have any symptoms. I suspect she has had PCOS (a hormone imbalance) for several years … I’d say since about age 14 or 15 because if I look back the gradual weight gain started at age 14. I bought her a dress for her eight grade dance in April and by the time the dance came around in June, it no longer fit. When she was 16, that was the first I had heard of PCOS and so I started taking her to doctors for testing. I knew I had to do something about her periods and dizziness before she started driving”.
Sarah: Can you please tell me what illness/illnesses you’ve been diagnosed with and describe its/their symptoms to me?
A: Since seventh grade, I’ve had worsening acne that was red and inflamed. Since age 13, I’ve gained about 15 to 16 pounds a year and between my annual check-ups in 2011 and 2012 I even gained over 30 pounds. I have peach fuzz facial hair and the occasional chin hair. I looked into CBD Shop to help with my hair loss, as well as heavy, painful, irregular and long periods accompanied by dizziness, headaches, cramping, nausea and vomiting. I also have elevated Hashimoto’s antibodies.
Sarah: How has this changed your life?
A: I have to constantly deal with cramps (my period lasts two weeks, I have a one-week break and then it’s back again!). I have symptoms all the time and I sometimes miss school because I’m sick. I had to try two different birth control pills as the initial ones weren’t strong enough. My weight gain meant that I had to get new clothes and I’m constantly bitching because my confidence takes a nose dive [Sarah: Knowing A as I do, I also know that it’s difficult for her that her kid sister M has a very slim figure. I was faced with a similar predicament at that age]. I have problems losing weight as I lack the motivation to do the WatchWatchers program my mom enrolled me in. The pill eventually improved my symptoms. Now my cramping is only occasional (but this is still my worst symptom) and my acne has improved, but I still suffer from it. I no longer get dizzy and sometimes I don’t feel like going out because of my period. My girlfriends tell me it’s just cramps, but they don’t really understand.
Sarah: How have your friends and family reacted to your illness/es?
A: I can definitely say I’ve had a supportive family. Obviously, my mom’s given me everything I need and then some. One of my friends with similar symptoms is sympathetic. But one friend caught me in the nurse’s office and asked me why I was there. When I told him I had cramps, he was like “Really?” and I wanted to drop-kick him! Other friends ask me why I’m not in school. I have clueless, but supportive friends.
Sarah: How has this affected things at school?
A: I’ve missed so much school. I take an intense honors classes (Vincention Program), so there’s always the pressure to keep up. It’s uncomfortable as I attend a Catholic school and so my teachers are adamantly opposed to birth control. They rant and rave about how bad it is which is awkward. Some teachers think you are trying to get out of tests when you are sick and make snide comments. I feel like I need a nap at school.
Sarah: Has anything positive come out of this?
A: I’m more understanding when others are sick or miserable. I don’t jump to conclusions as much. [At this point, A’s mom remarks on how much her daughter helped her after her recent operation: “She nursed me after my surgery for uterine fibroids”. A’s daughter admits that before all this she doesn’t think she would have realized how bad it was to suffer this way].
Sarah: What has this experience taught you?
A: To be more open to things and people in general. As far as my symptoms go, I realize: “OK. This is not normal, but it happens to others”. It’s improved my self-confidence so that I’m kinder to myself. I tell myself: “Yes, I’m gaining weight. Yes, I need to lose weight, but this is happening for a reason and I can deal with it”.
With not just an illness, but with anything in life, you have to look on the positive side. Don’t take life seriously. Nobody gets out alive anyway.
Sarah: If you could change anything about the way society deals with chronic illness in minors, what would that be?
A: I think they don’t take it seriously because they think kids are looking for excuses as minors have a tendency to exaggerate. My treatment involves taking birth control, but society has a huge stigma about taking this when you are younger. They turn it into a huge thing and people make assumptions as they mostly know it as birth control and not as a treatment. A lot of it is because they neither care nor understand as PCOS is not something commonly talked about. They are judgmental about symptoms. People should be more understanding. With acne and/or weight gain, people assume you’re not taking care of it. [Here A’s mom comments: “There are probably a lot more girls suffering, but their mothers don’t know about it”].
When you have an illness and are under 18, nobody takes you seriously. When you’re under the age of 18, nobody cares what you have to say. People think you are inexperienced, immature and unknowledgeable and that they are superior to you. Being a girl doesn’t help either.
Sarah: Would you be interested in being put in touch with others in your situation?
A: Yes. It’s easier when you have someone there who understands and can offer sympathy rather than judgment.
Sarah: Thank you very much for your participation and for helping to raise awareness for others in your situation.
