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The Visible vs Invisible - Aisha's Story

Which of your symptoms are invisible?

After coming across Tilly's email prompt for this week, it made me think long and hard. Have a rare condition which is very visible, I never thought that there were some things about my Morquio which are invisible. It made me realise, that I certainly do mask some of my symptoms, like the constant fatigue, excruciating pain that I must deal with in my joints or body, the migraines on a daily, nausea and the depression which I carry around with me. I must add psoriasis too, the flare-ups I have just out of the blue.


What do you wish people could see about your illness?

I wish people could see through my fatigue and pain, just because am sitting there in my chair normally doesn't mean I am well. I often don't show my pain and fatigue for fear that others don't get it.


How does having an invisible illness affect you socially?

When my symptoms randomly decide to show up, I hide away and don't embrace the world. I am constantly cancelling on meeting up with my friends and family, or not joining in on the quality family time which makes me miss out on having a social life.


How does having an invisible illness affect you at work?

Greatly, I cannot work the normal 9-5. I chose to work when I can and at my pace. When I used to be able to work, my managers could not understand my illness, why I had to take time off on the days that I couldn't get out of bed, or the fact I had a lot of hospital appointments. So much so in my previous job role, I was made redundant whilst on sick leave which has caused me major PTSD in applying for other jobs.


However, being part of M4RD and working with Demontfort University means can work at my own pace and it is not something that is forced upon me. It's good to have bosses and colleagues who get you and your health, that's rare!


How do you feel when people use the phrase 'you look so well'?

I hate it because they don't get me and they are not inside my body to know. It feels unusual more so from people who know me well maybe they still don't!


Share a top tip for our readers on dealing with invisible illnesses

It is okay to say NO, when you can't do commit to things. Remember it is about you and your body. It is okay to explain why you can't learn to do things at your own pace to have that healthy life balance.

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