Fertility and disability – my experience

image of Nia, her Husband and IVF twins fertility and disability

Fertility and Disability

I had the pleasure of working with Nia and sharing her journey with her so I was very grateful when she sent me this article about her experience of fertility and disability. Living with a disability, overall, affects a small percentage of the population so the process is geared up to the majority, as you would expect. However, we therefore often overlook the fact that those with disabilities also want, and have a right, to be parents and that other aspects may need to be considered to support people in their fertility journeys.

Infertility, unlike people, does not discriminate and affects anyone, regardless of race, disability, religion, political viewpoint or anything else for that matter. Here, Nia kindly opens our minds by providing an insight into the additional challenges those with a disability face going through this already challenging and emotional process.

Who am I?

My name is Nia and I am 30 years old. I am registered blind with a congenital sight condition and also have a condition called Hypopituitarism. This condition basically means that my pituitary gland doesn’t work and therefore the hormones required to go through puberty, ovulate and even to grow aren’t produced. As a result I have been on a concoction of medication including HRT, growth hormone, Thyroxine and Hydrocortisone.

When I was a teenager and was told I would have to take HRT meds to start puberty, I asked if I could have children and was told that I would not be able to conceive naturally. I suppose at the time I didn’t really understand the impact this would have on my life but when I met my now Husband at the age of 18 the reality really did kick in.

The start of our IVF journey

In 2015 we started our fertility journey with ovulation indication treatment; after many negatives, over-stimulation etc. in 2018 we started the first of our IVF cycles. I did fall pregnant but within a week I had a negative pregnancy test and my world fell apart, I had definitely lost all hope. A month before my 30th birthday we started our final IVF cycle and I will confess that I was just going through the motions and never believed that I would achieve my absolute dream, the ultimate dream of being a mother and starting a family. As I write this I have had two beautiful baby twin boys and I still can’t believe it!

Emotion overload

I could write an article about the feelings of guilt that I felt when my sister became pregnant accidentally, the feelings of not fitting into society as a woman as I wasn’t a mother, the feelings of letting everyone down because a cycle hadn’t work and the absolute all-consuming feelings of jealousy of friends, celebrities and strangers on the street when I saw them walk past with their prams not knowing how lucky they are but what I wanted to raise awareness of is the challenges facing women undergoing fertility treatment who are living with sight loss.

Barriers to my IVF treatment

The first barrier I experienced was transport. My treatment took place in a city local to me, which for me required leaving the house at 5:00am, my Mother in-law dropping me off at the train station, getting a train and then a bus to be at the clinic for bloods and scan for 7:30am and then do the return journey straight to work which took at least 2.30 hours from when I left the clinic. I did this journey every two days for about 10 days (sometimes longer) for each ovulation induction cycle.

I always remember waiting outside on the steps of the clinic for doors to open in the pitch black and freezing cold and a couple walked up the stairs and said “these early morning journeys are really killing me” to which I replied “oh where have you travelled from?” and I received the answer “ten minutes away but getting up at 7am is really killing me”….. if only they knew. The winters were the worst as when I got into the city it was completely dark, many a time I missed my stop or hailed the wrong bus, but luckily my white cane meant that early morning commuters were more than happy to help.

Medication challenges

Another challenge I faced was the medication itself, I can’t tell you how hard it was to see the transparent liquid in the syringe and seeing if I had drawn the correct dose or if I had removed the air bubbles, it was a great source of anxiety for me but all I could do was try my best and try to get in the best light (which isn’t always possible when you are out and you are having to do your injection in a very poorly lit toilet in Costa Coffee).

Be considerate of others’ challenges

This isn’t intended to be a “woe is me” article but it has got me thinking about the challenges that couples have to overcome to achieve their ultimate goal of becoming parents. For me, there were so many emotions that we all feel when undergoing fertility treatment but these seemed to be highlighted tenfold when I was waiting for the delayed or cancelled train to get back to work as soon as I can because every trip to the clinic used my annual leave or any lieu time I had managed to build up before each cycle. I count myself lucky that I have usable vision which meant that I could do the treatment, if I was totally blind I don’t think I could have: medication and transport being the two major barriers.

My husband and I are both registered blind and I know that we are going to face many challenges as parents but I know that we can get through the challenges that are thrown in our way. We are so excited to be parents and to have had our dream realised.

Good luck to all going through their fertility journey, you are all amazing!

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