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5 Reasons to Get Involved with our “Invisible Illnesses” ASMD Focus Group.

Posted: 13.06.20

You may have noticed that we are holding a Zoom focus group next Tuesday centred around ASMD Niemann-Pick disease type B, and other “invisible illnesses”. If not, where have you been? To fill you in, this meeting is in preparation for an upcoming awareness campaign which we hope will be massive in scope, and impact.

We are really excited to get started on this project. We were originally planning to develop this campaign in 2020, but…well, this year had other ideas! But despite this setback we are confident we can start putting the pieces into places for when we have the go ahead to get to work.

But, in order to create a campaign that would be effective, and ultimately what would lead to the largest benefit for everyone, we need your views, opinions, and experiences to ensure it is informed and true to our community.

You might be feeling a hard pass on this one. Maybe you feel like you haven’t experienced feeling “invisible”. So this blog tries to break down what feeling “invisible” might mean and gives five reasons why this focus group might actually be for you.

1. You have ever felt “invisible” in the past.

It could be from a day to day struggle or a lack of representation in the media. Maybe someone has overlooked your disease, challenge, or personal struggle and this has negatively impacted you. Feeling “invisible” doesn’t necessarily mean that others cannot see you, but perhaps you have been misunderstood or overlooked in the past.

2. You want to express your own opinion/ experience.

Perhaps in the past you have never heard anyone else voice your experience or speak from your perspective. Or perhaps you want to give a voice to times when you have felt invisible. This focus group is the perfect opportunity for your voice to be heard and we intend that the campaign will be based around your experiences and feedback, the more voices we hear from, the more true to life our campaign will be!

3. You have not seen your condition represented in the media.

Maybe you feel that your struggles or challenges are not understood by others and this means you sometimes don’t feel seen. Or you may have never viewed your experiences in media representations. Raising public awareness of ASMD Niemann Pick disease type B, for example, is important so that the general public understand that although your disease is not visible it can affect your day to day life. Hence, encouraging others to empathise with your experience and be more aware that not every disease, challenge or struggle is not always physically visible.

4. You want the opportunity to chat with others who have felt invisible.

In the past you might have felt you were the only one to have gone through your experiences and so you feel invisible to others as they are unable to understand. The upcoming focus group will be an opportunity for us all to meet together (virtually) and share our experiences with each other.

5. You are caring for someone who feels invisible.

This focus group is not just for those who would categorise themselves as having an invisible illness, perhaps you care for or check in on someone who has an invisible illness. Maybe you have felt in the past that the care you give, responsibilities you have and work you do is misunderstood or not acknowledged. If so, you may want to voice these experiences and perceptions in our upcoming focus group.

We are inviting everyone who feels they can add or engage with this conversation, including NP-C families, INPDA friends and supporters of NPUK. The focus group will be taking place on the 16th of June at 13:30 over Zoom. If you want any further information, or even better we have convinced you to get involved, email or call: 0191 415 0693

Researched and written by NPUK Communications Assistant, Eleanor Lily Taggart.