More and more people are wanting to share their stories which is great! I have a lot of respect for Maddie as she’s sharing something about her that’s so so personal, and she explains why it can be awkward to talk about at times, but I’m so glad that she wanted to raise awareness for it, because I know that it will inspire others to as well. I hope this post will influence people who are living with an invisible illness to raise awareness for their illnesses despite the nature of their condition. Have a read of this girls story!
What is the name of your condition?
Polycystic Ovarian Syndrome (PCOS)
How long have you had it for?
PCOS is something you are born with as it is a genetic disorder but tends to become apparent in your late teens.
Daily struggles and how it’s affected you?
It can be a difficult condition to manage at times. I am quite lucky as I don’t have all the symptoms of PCOS such as obesity and excessive hair growth (face, back or chest) but I do suffer from irregular periods which can be incredibly painful, bloating and insomnia. All this can lead to bouts of depression which took a lot for me to get through.
I have to be really careful with my diet as the wrong food can make the condition worse.
The insomnia affected me in a huge way and I now take my sleeping habits very seriously, a lot of the time it takes priority as the condition can cause exhaustion making getting tasks done in the day incredibly difficult.
Even though I can get on with my day pretty much as normal, some days are dictated by my menstruation struggles or by my sleep cycle which can be frustrating and causes some anxiety.
A lot of the anxiety is aimed at my body as even though I am lucky enough not to have a real issue with my weight it is incredibly difficult for me to lose weight and the bloating only makes me feel worse about it.
How have you dealt with it?
To begin with I honestly didn’t deal with it very well as I wasn’t properly informed by my doctors about the condition until my sister was also diagnosed. I wasn’t aware of the specific diet or that PCOS was the cause of my insomnia. PCOS also affects your fertility and that was also interesting to get my head round. But once I read more about my condition I changed my habits and now know what I have to do to get a decent night’s sleep and to avoid things that cause me discomfort. I think now the best way to deal with it is to be prepared for the eventualities such as sudden periods, pain or bloating.
Is there treatment for this condition?
Unfortunately, no. It’s a condition that can only be managed.
Did you ever find it hard to speak about?
Yes, definitely. Speaking about problems with your womb is very intimate and can make people uncomfortable, especially men. It has come up in conversations before and it definitely was awkward to discuss it. I think it’s possibly because the reproductive system is so fundamental that it makes it more uncomfortable to others that mine doesn’t work quite right.
Do you know anyone who has the same condition/s and if not has it been hard to know that no one has it?
My sister has the condition as well which is reassuring to have someone so close to me going through the same thing as she gives me a lot of advice of things that are working for her. However, I don’t know anyone else going through it which I find surprising as it affects one in five women in the UK.
What would your advice be to anyone who is dealing with an invisible illness?
I would tell them that, whether it’s a mental or physical condition, don’t worry you are not crazy. Whatever you’re going through is a real thing and it doesn’t make you less important than others who aren’t. Putting yourself first is the most important thing and looking after yourself should be your priority.
What would your advice be to people who are trying to help someone with an invisible illness?
Patience is so important. They are going to have their up days and down days but knowing you’re there ready to catch them if they fall is a huge motivation for them to prioritise their health.
DID YOU KNOW???
-That people with PCOS have a higher risk of developing:
- type 2 diabetes
- heart disease
- womb cancer
-PCOS may run in families. You may have more risk of developing PCOS if a close family member, such as your mother or sister, has the condition.
CLICK HERE for further information.
Thank you to Maddie for letting me share her invisible illness on my blog! Overall i think the important message here is to not be ashamed of speaking up about your conditions no matter what part of your body it is. Like Maddie said, It’s so important to prioritise yourself and your health. I think that the key to helping yourself is to talk to people for advice on how to manage it and know that there is always someone out there who’s listening and wiling to help, whether that’s a doctor, family member or friend! Despite having a rare condition, I know that something that has really helped me is to join groups on Facebook and find people online who have the same/or a similar condition to me, so then I can ask people how they deal with it, and what things they put in place for themselves to cope and manage.
Take care of yourselves people!
Thank you for reading,