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My mates been diagnosed with an NMC condition: help!!!!

10 things I wish all my friends knew when I was diagnosed.

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community Sarah Shaw

I'm one of the many people with a muscle wasting condition that hasn't quite got a name yet or official diagnosis, I live with my wife and Friday our furry companion. I first started to notice changes in my body in 2008 so I have been living with this degenerative condition for more than a decade now. I have used a wheelchair as my mode of getting around since 2014. I love getting out and about in the community and am interested in Theatre, Music and the Arts. I also keep an eagle eye on what is happening in current affairs across the country. I worked in the Federal Public Service for twenty-six years and retired due to invalidity about two years ago.

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Firstly, congratulations for seeking out information, being open to actually learning about the conditions and what you need to know to support your mate is a fantastic first step. Secondly, let’s start the journey by acknowledging that you’re probably going to realise at some point that you’ve done something that was hurtful, said something hurtful to your mate. That’s okay the reality is that sometimes it is very hard not to. There are some things you can do to be a better friend to them though.

Here are 10 things I wish all my friends knew when I was diagnosed till now.

  • Throw out all the clichés about chronic illness and disability that are typically used to discuss it. Don’t talk about karma or God only giving you what you are strong enough to bear. Don’t ponder whether there is some higher reason this has happened that will show itself at some point. Don’t insist on talking about all the conditions which you deem worse than what I have and insist I should be grateful; I only have ….. Just acknowledge that it is what is and what it is, is not great.
  • If you need to talk to someone about what my future might look like. I’m not your go to girl. When I’m ready I’ll do all of those responsible things like planning for the future and talking about it now, months. years ahead of time doesn’t help me. Let me do the hard stuff in my own time.
  • I’m still me, everything I enjoyed doing pre-diagnosis I still love. Every dream I had is still there. So, include me in everything if at all possible, especially all of your important life moments. If I didn’t like sitting on the sidelines watching before my diagnosis, I’m not going to love it now.
  • I still need to feel needed. One of my greatest joys pre-diagnosis was being able to do things for others, give to others. That doesn’t stop just because I now have a condition. Let me do that.
  • I still need to know all about you and your life including medical stuff. This is not a competition and I am not winning. Tell me about how awful the flu made you feel, and how your morning sickness is driving you insane. This friendship thing goes both ways.
  • One of the negatives of living with a disability is the planning. Having to ring restaurants and make sure they can accommodate the chair. Booking through accessibility lines etc. If we are going out don’t delegate that to me all the time to organise, you can have those conversations just as well as I can. Surprise me by telling me you’ve done it and we are in.
  • Don’t make sweeping statements about doing anything I need. Tell me what you are actually comfortable doing and if you offer and I accept, follow through. If I don’t accept the first time, keep asking, things change.
  • I may have periods where I don’t want to talk about it at all, I may have periods where I need to discuss it loads. Be willing to be there for all of it. Keep checking in.
  • Friendships evolve and grow over time. Keep evolving with me. Being diagnosed with an NMC is like being taken to a foreign country where you don’t know the language or the customs. Be interested enough to at learn enough of the language and the customs so that we can still connect with each other.
  • Having a visible disability attracts paternalism and a loss of agency in this community. I may therefore sometimes be more sensitive than I was previously in some instances. Educate yourself on what ableist language is so that you know why I’m reacting the way I am.

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