Finding a Community When Living with a Disability
In this post we discuss the importance of finding a safe community while living with a diagnosis
Coach Latrice
7/4/20262 min read
It is important to find a safe space when living with a disability.
What do I mean by safe space. I mean a place where you can talk about, ask questions and share info about your diagnosis.
Initially, after receiving a disability, we usually assume our safe space is friends and/or family, maybe your doctor. This is fine for a time, and sometimes a long time.
Yes, we should be able to share with friends and family what we are going through and how we are feeling. However, if you are like me, you prefer not to risk over sharing, and having people say, "OMG, that's all she talks about."
Yet, it is still important that you be able to process your feelings, ask questions or just vent without feeling like you are a burden.
Aside from family, whose available to provide that service?
Well, my friend, I am glad you asked. There are a variety of resources available to provide the safe space.
Your doctor, or the staff that provided the diagnosis.
Medical Social Workers and/or Case Managers at your local hospital or clinic.
Diagnosis Specific Organizations such as ALDConnect.org; AFB.org (community for those living with visual impairments); and Seizuresaresigns.com (those living with seizure disorders) just to name a few.
Programs such as In-Home Support Services or IHSS who provide actual in home support for folks living with disabilities.
And community or support groups. These are often found through diagnosis specific organizations. Some groups are local, nation or worldwide.
Google and 2-1-1 are a great way to find local support groups. Search by diagnosis. You can call 2-1-1 directly or search 2-1-1 online by city, county or state.
Importance of the support group.
Again, we need a safe space to share and/or learn and community or support group is great place to share all the things: the good, the bad, and the what the heck. Here you can ask all the questions safely and typically without judgement.
I know, I know, you're thinking 'I don't want a support group or to talk to strangers about what's going on with my body'. But you know, sometimes it's easier to talk to strangers. And guess what, your bestie used to be a stranger - just saying. LOL
A support group is also a safe place where you can listen and hear what others are going through. This has been helpful in reminding me that I am not alone. That, although this thing may be rare, there are others going through the same thing at one level or another. I've also found support groups are a great space to learn about tools that may be helpful now or in the future, hear about the latest and greatest research or medications, and even a new doctor or clinic.
There are many support groups for each diagnosis so find one that works for you. I participate in Women with ALD hosted by ALD Connect. They also host groups for men with ALD, children or care providers of folks living with ALD.
Whatever diagnosis, big or small, please find a safe place to share, learn and commune.
If you need help finding a resource, feel free to reach out to me at Hello@afflictedandfabulous.com
Coach Latrice