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I feel like an imposter

(6 Posts)
namechange9000798 Thu 04-Jun-20 17:28:19

I've name changed, this will be long and rambling, and I'm going to change a lot of details here including the type of disability and body part, so I hope I don't accidentally offend anyone with my example.

My DS was born with a very rare condition involving his legs, obviously I was a very worried new mum so pretty much immediately reached out to a couple of charities and help lines that support parents and patients. Due to the rareness there is only one truly active charity. They cover three areas
1 - Children born with underdeveloped very small legs
2 - Children born with missing parts of legs
3 - Children born without legs at all

So I joined this charity, signed up to their support groups, added their social media discussion pages and all that jazz, while we went under testing to find out exactly what condition ds had and how it would affect his life.
Extremely lucky for us it turns out Ds has the equivalent of missing toes on one foot, (excuse my bad example, I really don't want to say what it is.) So day to day life is barely different at all, obviously there is a visual difference but in terms of walking he should only struggle about 20% more than the average person. Ds is a toddler so we can't tell a difference at all currently as all toddlers stubble and fall, maybe he'll grow out of it, maybe he won't. We'd never wish this on him of course, but in terms of how bad it could potentially be this is good news.

Back to the charity, they are a lovely amazing group who do wonderful things, I'm sure they will come in very handy to us. I enjoy reading the discussion boards, finding out new things about these disabilities, when ds gets older he may want prosthetic toes and I can find information within this group about that. So I'd like to stay around. BUT because they cover all three areas I mentioned, I think we may be the "least affected" in the group. And therefore we don't need to join in with a lot of what they provide. For example, a big thing - they do special holidays in disability friends cabins, no cost just donations, so every child who can't walk can experience normal childhood holidays. We obviously won't be going as Ds can probably walk fine, so we can go on any old holiday and would be abusing the charity if we took that opportunity.
A small example - They have invited all members to join in a group zoom call tonight with councillors to discuss how we're all coping with our disabled children during the coronavirus. But we're coping the same as any other parent and have barely thought about the disability.
There is no way I'd join in with a chat to say "yes we're doing completely fine because my child is so much more able bodied than the rest of you." !! It's such a small group that it's obvious when we don't join in with these things, I'm worried they're thinking we are antisocial or don't deserve to be in the group. I'd really like to stay but I feel me and ds are the "ones who got off lightly" and other members aren't happy with our presence.

Aibu to stay in this group? I know technically we belong, but surely it would annoy you if your child had no legs and someone was using the same service as you when their child only had no toes..

Lockeduporknockedup Thu 04-Jun-20 17:34:45

You're not an imposter - you're just lucky. You're no less in need because other people are more in need. Some children and their parents will cope better with no legs than another parent and child would cope without a toe - people don't suffer the same. You may need this group more than other people even if your son's condition is lesser. You're not an imposter.

Laiste Thu 04-Jun-20 17:45:57

How about concentrating not only at what you can get out of it but what you can put in? Earn your place in the group (for your own peace of mind) so to speak, with joining in with ideas for fundraising, get togethers or just post regularly with lots of support and empathy when members who are down and struggling?

I'm sure no one is keeping tally on who's the worst and who's the least worthy ect.
flowers

Rose789 Thu 04-Jun-20 18:30:45

I am in a group for an externally rare genetic condition- Adams Oliver syndrome.
People are affected differently it causes shortening of limbs, missing fingers toes, cranial abnormalities. Some people are much more affected then others. I don’t judge anyone that is less affected then me and my family, and I wouldn’t expect people who are significantly more affected to resent my presence on the group. If you think people will think you are anti social (I honestly don’t think people would even notice unless there are only 10 members or something. Then put up a post explaining how you feel? I honestly wouldn’t worry though. Some people will contribute lots to groups some not at all. No one should be forced to contribute unless they want to.

namechange9000798 Thu 04-Jun-20 18:47:29

Thank you everyone, we absolutely do get involved in fundraising. It just feels a little like we don't belong, it's probably just my own anxieties being silly.

MintIceLolly Thu 04-Jun-20 21:33:51

Similar position. My DD is mildly affected by a mobility issue and we're in a group on Facebook for it. Some of these DC can't and never will walk, so I feel guilty posting about my DD walking - that's not to say she's not affected she is (she tires quickly, struggles with walking when it's cold etc she also walked very late compared to similar aged DCs). I've never been made to feel like I shouldn't be in the group though, I do struggle to know what to say to those who have children more badly affected.

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