“They don’t understand and just think I’m lazy.”

In a bid to raise awareness on an under-reported health issue, IPF has started a special Invisible Illness series where we speak to young people about their experiences with invisible illnesses. 

This week, we speak to Hayley Tole, 25, from Colchester about her experiences with Hypothyroidism.

What is your invisible illness called?

Hypothyroidism (under-active thyroid).

What symptoms does it cause?

I put on weight very easily and struggle to shift it. The main symptom I get is exhaustion – not just being tired but physically not being able to get up. Some days I can’t even make it around a few shops without having to sit down for 20 minutes! And I can quite easily sleep for 24 hours.

How does it personally affect your life?

Honestly I don’t really have much of a life. I used to be out all the time and always going around to see friends. Now all I can do most days and nights is sit in and hope that friends will come to me. It can be quite lonely as I often miss out on things. I recently couldn’t go to Thorpe Park with all my friends as I was just too tired.

Have you experienced any discrimination because your illness ‘can’t be seen’?

Yes and the worst part is it’s often by loved ones. They don’t understand and just think I’m lazy. Even my mum is always saying I need to get out more, etc.

What kind of care have you received and how has it affected you?

The doctors just give me pills although it took a while to get them, I would say they have helped quite a bit but I’m not back to “normal” and I now have to take them for the rest of my life. When I went to the doctor about being tired all the time, they never even suggested Hypothyroidism. The first suggestion was diabetes.

The problem is that my condition gets me down, but I haven’t been offered any help for that because I don’t think people understand the emotional and psychological impact of living with this illness.

Do you think enough is being done in the health sector to cater for invisible illnesses?

Absolutely not. The problem is that many people don’t know how they can help if they don’t understand and haven’t experienced it. It’s a tricky issue because it’s not a fatal or degenerative condition once you’re on medication, but since there’s no cure it requires lifelong treatment.

Do you think there is enough media awareness about invisible illnesses?

Recently I’ve seen more on social media about mental illnesses, which I think is great, but in terms of physical invisible illness — then no. When the doctor told me I had Hypothyroidism, I had never heard of it before and had to do most of my research online. To be honest I was frightened by the information I found, as I would have to take medication every day for the rest of my life. Until then it hadn’t occurred to me that it could be a lifelong condition.