When I first contacted @invisibletogether through instagram, I was not sure what route this post was going to take. Once she shared her story, I became aware of an important fact that I had not thought about before. Just like many other medical problems, infertility itself is an invisible struggle. Fertility problems are not easy to spot or notice just by looking at someone. There are many other syndromes/disorders that are the same. These have a different impact on individuals when compared to physically noticeable disorders. It is difficult to understand what people with invisible disorders have to deal with, since we can not pinpoint what may be wrong. They may seem completely healthy but there might be some underlying issue that we are not aware of. Let's start with her journey and all of the hardships she's had to deal with.
She first met her partner, Andrew, in high school. They were initially friends but drifted apart as their groups of friends changed. A year or two after, their friendship rekindled at college. Soon after they became inseparable and started their relationship. After 3 years of unprotected sex, they realized that something might be wrong, as they had not been able to conceive naturally. This along with the fact that she had been experiencing irregular painful periods were a clue that something might be going on. She mentioned that her cycles had become irregular and painful after she had stopped using the contraceptive pill. Of course everyone has different experiences with the same medication and there may be other explanations for her symptoms but her personal opinion about the pill was not positive. So she went in to see her doctor who prescribed some blood tests to try and figure out what was going on. Her thyroid results were fine but her hormonal profile came back as "extremely abnormal". When she went in for a follow-up appointment, she was told that she may possibly have Polycystic Ovarian Syndrome (PCOS) which would need to be confirmed with more tests and scans. Her scans seemed normal but the diagnosis was still PCOS based on previous results. Each person's struggle through PCOS is a different one but I think her story shines a light on this syndrome and I am hoping it will open up conversations on how to deal with it. She was advised to lower her BMI to increase chances of pregnancy and so she has started a ketosis diet to help with this. She is currently waiting for her next appointment and possible treatment plan based on all of the test results. She also mentioned that she suffers from Ehlers-Danlos Syndrome as well as Postural Orthostatic Tachycardia Syndrome. These "invisible" disorders are not easy to deal with but she has been able to persevere. Through it all, her partner has been by her side and supported her. She has been able to remain positive throughout her diagnosis and journey so far. She has not let her problems define who she is and is maintaining optimistic with her treatment plans. It is not easy but with the support of her partner, they have been able to keep a positive outlook. She has created a page with a positive spin on invisible illnesses and is reaching out to help others cope.
Infertility itself is considered an invisible struggle. Even though couples suffering with infertility may seem distant, or emotionally unwell, it will be difficult to pinpoint exactly what might be going on. Therefore, it is crucial for us to be aware of how we act and the things we say to others. Some comments that are intended to be harmless may have a greater impact on individuals suffering from invisible disorders. With infertility, some people may feel ashamed or guilty to share their struggles, which is completely understandable, and so we have to make sure that we don't add stress/pressure for that individual. I would like to take this opportunity to thank @invisibletogether for sharing her story with me and shining light on a topic that is not commonly talked about. The struggles of invisible syndromes/disorders are just as real and painful as any symptoms that we may be able to see. These individuals often suffer in silence but we want to change that. Starting with raising awareness that invisible does not necessarily have to mean pain in silence. Let's work to make the invisible come to the forefronts of our conversations and help these individuals cope with what may feel like a lonely journey. Please contact me directly if you need help or just want to have a chat.
